TY - JOUR AU - Heryawan, Lukman AU - Mori, Yukiko AU - Yamamoto, Goshiro AU - Kume, Naoto AU - Lazuardi, Lutfan AU - Fuad, Anis AU - Kuroda, Tomohiro PY - 2025/4/21 TI - Fast Healthcare Interoperability Resources (FHIR)?Based Interoperability Design in Indonesia: Content Analysis of Developer Hub?s Social Networking Service JO - JMIR Form Res SP - e51270 VL - 9 KW - interoperability KW - Fast Healthcare Interoperability Resources (FHIR) KW - COVID-19 KW - Satusehat KW - Indonesia KW - interoperability design KW - social networking KW - health information KW - content analysis KW - private clinic N2 - Background: Interoperability in health care is a critical aspect for the exchange of health information. The Fast Healthcare Interoperability Resources (FHIR) framework has become widely adopted to provide interoperable data exchange in the health care industry. The COVID-19 pandemic has demonstrated the significance of interoperable data in tracking patients who have contracted the virus and keeping track of the vaccinated population. Indonesia is one of the many countries that have implemented interoperable data systems to track patients with COVID-19, and it has aspirations to expand the system to other use cases, particularly in the primary health care setting. The primary health care providers in Indonesia include Puskesmas (community health centers) and private clinics. Objective: To promote interoperable health data exchange in the primary health care sector, the Indonesian government has launched the Satusehat project. The goal of the Satusehat platform is to make health data in Indonesia interoperable and exchangeable between health care organizations, particularly Puskesmas and private clinics. Methods: For a successful implementation of the Satusehat platform in Puskesmas and private clinics, it is crucial to understand the challenges that may arise. This study analyzed the pain points of the Satusehat platform based on a content analysis of the Satusehat Social Networking Service Telegram group messages. The study revealed the pain points and suggested existing approaches to address them, which can be used as a proposed design of interoperability for Puskesmas and private clinics, making it easier for these organizations to adopt the Satusehat platform. Results: The pain points identified in this study include issues with the FHIR server, problems with FHIR profile selection, and the mapping of electronic medical record data into standardized data, such as mapping into the Systematized Nomenclature of Medicine Clinical Terminology. The results show that the value of the mapping issue is 37, profile issue 9, and server issue 61. Among the 3 categories, server issues had the highest population, followed by mapping issues and then profile issues. To address these issues, the study proposed practical approaches, including a federated architecture for the FHIR server instead of a centralized architecture, an FHIR writer and FHIR viewer system inspired by the Standardized Structured Medical Record Information eXchange system in Japan, and an FHIR conversion framework that integrates with our FHIR writer and FHIR viewer system. Conclusions: These proposed solutions can help resolve the pain points identified in the study and help the advancement of the Satusehat platform implementation in Puskesmas and private clinics in Indonesia. We believed that the proposed solutions have potential to be adopted to other countries with similar issues when conducting nationwide project in health care interoperability design. UR - https://formative.jmir.org/2025/1/e51270 UR - http://dx.doi.org/10.2196/51270 ID - info:doi/10.2196/51270 ER - TY - JOUR AU - Li, Lan AU - Back, Emma AU - Lee, Suna AU - Shipley, Rebecca AU - Mapitse, Néo AU - Elbe, Stefan AU - Smallman, Melanie AU - Wilson, James AU - Yasin, Ifat AU - Rees, Geraint AU - Gordon, Ben AU - Murray, Virginia AU - Roberts, L. Stephen AU - Cupani, Anna AU - Kostkova, Patty PY - 2025/3/25 TI - Balancing Risks and Opportunities: Data-Empowered-Health Ecosystems JO - J Med Internet Res SP - e57237 VL - 27 KW - health policy KW - data sharing KW - digital healthcare KW - healthcare system KW - ecosystems KW - technologies KW - decision-making KW - data privacy KW - data protection KW - social media KW - application programming interfaces UR - https://www.jmir.org/2025/1/e57237 UR - http://dx.doi.org/10.2196/57237 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/57237 ER - TY - JOUR AU - Dima, Lelia Alexandra AU - Nabergoj Makovec, Urska AU - Ribaut, Janette AU - Haupenthal, Frederik AU - Barnestein-Fonseca, Pilar AU - Goetzinger, Catherine AU - Grant, Sean AU - Jácome, Cristina AU - Smits, Dins AU - Tadic, Ivana AU - van Boven, Job AU - Tsiligianni, Ioanna AU - Herdeiro, Teresa Maria AU - Roque, Fátima AU - PY - 2025/3/25 TI - Stakeholder Consensus on an Interdisciplinary Terminology to Enable the Development and Uptake of Medication Adherence Technologies Across Health Systems: Web-Based Real-Time Delphi Study JO - J Med Internet Res SP - e59738 VL - 27 KW - health technology KW - medication adherence KW - Delphi study KW - stakeholder engagement KW - digital health KW - behavioral science KW - implementation science N2 - Background: Technology-mediated medication adherence interventions have proven useful, yet implementation in clinical practice is low. The European Network to Advance Best Practices and Technology on Medication Adherence (ENABLE) European Cooperation in Science and Technology Action (CA19132) online repository of medication adherence technologies (MATechs) aims to provide an open access, searchable knowledge management platform to facilitate innovation and support medication adherence management across health systems. To provide a solid foundation for optimal use and collaboration, the repository requires a shared interdisciplinary terminology. Objective: We consulted stakeholders on their views and level of agreement with the terminology proposed to inform the ENABLE repository structure. Methods: A real-time web-based Delphi study was conducted with stakeholders from 39 countries active in research, clinical practice, patient representation, policy making, and technology development. Participants rated terms and definitions of MATech and of 21 attribute clusters on product and provider information, medication adherence descriptors, and evaluation and implementation. Relevance, clarity, and completeness criteria were rated on 9-point scales, and free-text comments were provided interactively. Participants could reconsider their ratings based on real-time aggregated feedback and revisit the survey throughout the study period. We quantified agreement and process indicators for the complete sample and per stakeholder group and performed content analysis on comments. Consensus was considered reached for ratings with a disagreement index of <1. Median ratings guided decisions on whether attributes were considered mandatory, optional, or not relevant. We used the results to improve the terminology and repository structure. Results: Of 250 stakeholders invited, 117 (46.8%) rated the MATech definition, of whom 83 (70.9%) rated all attributes. Consensus was reached for all items. The definition was considered appropriate and clear (median ratings 7.02, IPR 6.10-7.69, and 7.26, IPR 6.73-7.90, respectively). Most attributes were considered relevant, mandatory, and sufficiently clear to remain unchanged except for ISO certification (considered optional; median relevance rating 6.34, IPR 5.50-7.24) and medication adherence phase, medication adherence measurement, and medication adherence intervention (candidates for optional changes; median clarity ratings 6.07, IPR 4.86-7.17; 6.37, IPR 4.80-6.67; and 5.67, IPR 4.66-6.61, respectively). Subgroup analyses found several attribute clusters considered moderately clear by some stakeholder groups. Results were consistent across stakeholder groups and time, yet response variation was found within some stakeholder groups for selected clusters, suggesting targets for further discussion. Comments highlighted issues for further debate and provided suggestions informing modifications to improve comprehensiveness, relevance, and clarity. Conclusions: By reaching agreement on a comprehensive MATech terminology developed following state-of-the-art methodology, this study represents a key step in the ENABLE initiative to develop an information architecture capable of structuring and facilitating the development and implementation of MATech across Europe. The debates and challenges highlighted in stakeholders? comments outline a potential road map for further development of the terminology and the ENABLE repository. International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2021-059674 UR - https://www.jmir.org/2025/1/e59738 UR - http://dx.doi.org/10.2196/59738 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/59738 ER - TY - JOUR AU - Malik, Salma AU - Dorothea, Pana Zoi AU - Argyropoulos, D. Christos AU - Themistocleous, Sophia AU - Macken, J. Alan AU - Valdenmaiier, Olena AU - Scheckenbach, Frank AU - Bardach, Elena AU - Pfeiffer, Andrea AU - Loens, Katherine AU - Ochando, Cano Jordi AU - Cornely, A. Oliver AU - Demotes-Mainard, Jacques AU - Contrino, Sergio AU - Felder, Gerd PY - 2025/3/7 TI - Data Interoperability in COVID-19 Vaccine Trials: Methodological Approach in the VACCELERATE Project JO - JMIR Med Inform SP - e65590 VL - 13 KW - interoperability KW - metadata KW - data management KW - clinical trials KW - protocol KW - harmonization KW - adult KW - pediatric KW - systems KW - standards N2 - Background: Data standards are not only key to making data processing efficient but also fundamental to ensuring data interoperability. When clinical trial data are structured according to international standards, they become significantly easier to analyze, reducing the efforts required for data cleaning, preprocessing, and secondary use. A common language and a shared set of expectations facilitate interoperability between systems and devices. Objective: The main objectives of this study were to identify commonalities and differences in clinical trial metadata, protocols, and data collection systems/items within the VACCELERATE project. Methods: To assess the degree of interoperability achieved in the project and suggest methodological improvements, interoperable points were identified based on the core outcome areas?immunogenicity, safety, and efficacy (clinical/physiological). These points were emphasized in the development of the master protocol template and were manually compared in the following ways: (1) summaries, objectives, and end points in the protocols of 3 VACCELERATE clinical trials (EU-COVAT-1_AGED, EU-COVAT-2_BOOSTAVAC, and EU-COVPT-1_CoVacc) against the master protocol template; (2) metadata of all 3 clinical trials; and (3) evaluations from a questionnaire survey regarding differences in data management systems and structures that enabled data exchange within the VACCELERATE network. Results: The noncommonalities identified in the protocols and metadata were attributed to differences in populations, variations in protocol design, and vaccination patterns. The detailed metadata released for all 3 vaccine trials were clearly structured using internal standards, terminology, and the general approach of Clinical Data Acquisition Standards Harmonisation (CDASH) for data collection (eg, on electronic case report forms). VACCELERATE benefited significantly from the selection of the Clinical Trials Centre Cologne as the sole data management provider. With system database development coordinated by a single individual and no need for coordination among different trial units, a high degree of uniformity was achieved automatically. The harmonized transfer of data to all sites, using well-established methods, enabled quick exchanges and provided a relatively secure means of data transfer. Conclusions: This study demonstrated that using master protocols can significantly enhance trial operational efficiency and data interoperability, provided that similar infrastructure and data management procedures are adopted across multiple trials. To further improve data interoperability and facilitate interpretation and analysis, shared data should be structured, described, formatted, and stored using widely recognized data and metadata standards. Trial Registration: EudraCT 2021-004526-29; https://www.clinicaltrialsregister.eu/ctr-search/trial/2021-004526-29/DE/; 2021-004889-35; https://www.clinicaltrialsregister.eu/ctr-search/search?query=eudract_number:2021-004889-35; and 2021-004526-29; https://www.clinicaltrialsregister.eu/ctr-search/search?query=eudract_number:2021-004526-29 UR - https://medinform.jmir.org/2025/1/e65590 UR - http://dx.doi.org/10.2196/65590 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/65590 ER - TY - JOUR AU - Bazaco, C. Michael AU - Carstens, K. Christina AU - Greenlee, Tiffany AU - Blessington, Tyann AU - Pereira, Evelyn AU - Seelman, Sharon AU - Ivory, Stranjae AU - Jemaneh, Temesgen AU - Kirchner, Margaret AU - Crosby, Alvin AU - Viazis, Stelios AU - van Twuyver, Sheila AU - Gwathmey, Michael AU - Malais, Tanya AU - Ou, Oliver AU - Kenez, Stephanie AU - Nolan, Nichole AU - Karasick, Andrew AU - Punzalan, Cecile AU - Schwensohn, Colin AU - Gieraltowski, Laura AU - Chen Parker, Cary AU - Jenkins, Erin AU - Harris, Stic PY - 2025/2/28 TI - Recent Use of Novel Data Streams During Foodborne Illness Cluster Investigations by the United States Food and Drug Administration: Qualitative Review JO - JMIR Public Health Surveill SP - e58797 VL - 11 KW - foodborne illness surveillance KW - novel data streams KW - outbreak investigations KW - novel data KW - foodborne illness KW - foodborne KW - illness KW - United States KW - public health KW - prevention KW - outbreaks KW - social media KW - product review KW - cluster KW - product information KW - surveillance KW - epidemiology UR - https://publichealth.jmir.org/2025/1/e58797 UR - http://dx.doi.org/10.2196/58797 ID - info:doi/10.2196/58797 ER - TY - JOUR AU - Ohlsen, Tessa AU - Hofer, Viola AU - Ingenerf, Josef PY - 2025/2/28 TI - A Validation Tool (VaPCE) for Postcoordinated SNOMED CT Expressions: Development and Usability Study JO - JMIR Med Inform SP - e67984 VL - 13 KW - SNOMED CT KW - PCE KW - postcoordination KW - FHIR KW - validation KW - postcoordinated expression KW - Fast Healthcare Interoperability Resource N2 - Background: The digitalization of health care has increased the demand for efficient data exchange, emphasizing semantic interoperability. SNOMED Clinical Terms (SNOMED CT), a comprehensive terminology with over 360,000 medical concepts, supports this need. However, it cannot cover all medical scenarios, particularly in complex cases. To address this, SNOMED CT allows postcoordination, where users combine precoordinated concepts with new expressions. Despite SNOMED CT?s potential, the creation and validation of postcoordinated expressions (PCEs) remain challenging due to complex syntactic and semantic rules. Objective: This work aims to develop a tool that validates postcoordinated SNOMED CT expressions, focusing on providing users with detailed, automated correction instructions for syntactic and semantic errors. The goal is not just validation, but also offering user-friendly, actionable suggestions for improving PCEs. Methods: A tool was created using the Fast Healthcare Interoperability Resource (FHIR) service $validate-code and the terminology server Ontoserver to check the correctness of PCEs. When errors are detected, the tool processes the SNOMED CT Concept Model in JSON format and applies predefined error categories. For each error type, specific correction suggestions are generated and displayed to users. The key added value of the tool is in generating specific correction suggestions for each identified error, which are displayed to the users. The tool was integrated into a web application, where users can validate individual PCEs or bulk-upload files. The tool was tested with real existing PCEs, which were used as input and validated. In the event of errors, appropriate error messages were generated as output. Results: In the validation of 136 PCEs from 304 FHIR Questionnaires, 18 (13.2%) PCEs were invalid, with the most common errors being invalid attribute values. Additionally, 868 OncoTree codes were evaluated, resulting in 161 (20.9%) PCEs containing inactive concepts, which were successfully replaced with valid alternatives. A user survey reflects a favorable evaluation of the tool?s functionality. Participants found the error categorization and correction suggestions to be precise, offering clear guidance for addressing issues. However, there is potential for enhancement, particularly regarding the level of detail in the error messages. Conclusions: The validation tool significantly improves the accuracy of postcoordinated SNOMED CT expressions by not only identifying errors but also offering detailed correction instructions. This approach supports health care professionals in ensuring that their PCEs are syntactically and semantically valid, enhancing data quality and interoperability across systems. UR - https://medinform.jmir.org/2025/1/e67984 UR - http://dx.doi.org/10.2196/67984 ID - info:doi/10.2196/67984 ER - TY - JOUR AU - Seinen, M. Tom AU - Kors, A. Jan AU - van Mulligen, M. Erik AU - Rijnbeek, R. Peter PY - 2025/2/13 TI - Using Structured Codes and Free-Text Notes to Measure Information Complementarity in Electronic Health Records: Feasibility and Validation Study JO - J Med Internet Res SP - e66910 VL - 27 KW - natural language processing KW - named entity recognition KW - clinical concept extraction KW - machine learning KW - electronic health records KW - EHR KW - word embeddings KW - clinical concept similarity KW - text mining KW - code KW - free-text KW - information KW - electronic record KW - data KW - patient records KW - framework KW - structured data KW - unstructured data N2 - Background: Electronic health records (EHRs) consist of both structured data (eg, diagnostic codes) and unstructured data (eg, clinical notes). It is commonly believed that unstructured clinical narratives provide more comprehensive information. However, this assumption lacks large-scale validation and direct validation methods. Objective: This study aims to quantitatively compare the information in structured and unstructured EHR data and directly validate whether unstructured data offers more extensive information across a patient population. Methods: We analyzed both structured and unstructured data from patient records and visits in a large Dutch primary care EHR database between January 2021 and January 2024. Clinical concepts were identified from free-text notes using an extraction framework tailored for Dutch and compared with concepts from structured data. Concept embeddings were generated to measure semantic similarity between structured and extracted concepts through cosine similarity. A similarity threshold was systematically determined via annotated matches and minimized weighted Gini impurity. We then quantified the concept overlap between structured and unstructured data across various concept domains and patient populations. Results: In a population of 1.8 million patients, only 13% of extracted concepts from patient records and 7% from individual visits had similar structured counterparts. Conversely, 42% of structured concepts in records and 25% in visits had similar matches in unstructured data. Condition concepts had the highest overlap, followed by measurements and drug concepts. Subpopulation visits, such as those with chronic conditions or psychological disorders, showed different proportions of data overlap, indicating varied reliance on structured versus unstructured data across clinical contexts. Conclusions: Our study demonstrates the feasibility of quantifying the information difference between structured and unstructured data, showing that the unstructured data provides important additional information in the studied database and populations. The annotated concept matches are made publicly available for the clinical natural language processing community. Despite some limitations, our proposed methodology proves versatile, and its application can lead to more robust and insightful observational clinical research. UR - https://www.jmir.org/2025/1/e66910 UR - http://dx.doi.org/10.2196/66910 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/66910 ER - TY - JOUR AU - Amid, Clara AU - van Roode, Y. Martine AU - Rinck, Gabriele AU - van Beek, Janko AU - de Vries, D. Rory AU - van Nierop, P. Gijsbert AU - van Gorp, M. Eric C. AU - Tobian, Frank AU - Oude Munnink, B. Bas AU - Sikkema, S. Reina AU - Jaenisch, Thomas AU - Cochrane, Guy AU - Koopmans, G. Marion P. PY - 2025/2/11 TI - A Call for Action: Lessons Learned From a Pilot to Share a Complex, Linked COVID-19 Cohort Dataset for Open Science JO - JMIR Public Health Surveill SP - e63996 VL - 11 KW - data sharing KW - data management KW - open science KW - COVID-19 KW - emerging infectious disease KW - global health UR - https://publichealth.jmir.org/2025/1/e63996 UR - http://dx.doi.org/10.2196/63996 ID - info:doi/10.2196/63996 ER - TY - JOUR AU - Kaushik, Aprajita AU - Barcellona, Capucine AU - Mandyam, Kanumoory Nikita AU - Tan, Ying Si AU - Tromp, Jasper PY - 2025/2/4 TI - Challenges and Opportunities for Data Sharing Related to Artificial Intelligence Tools in Health Care in Low- and Middle-Income Countries: Systematic Review and Case Study From Thailand JO - J Med Internet Res SP - e58338 VL - 27 KW - artificial intelligence KW - data sharing KW - health care KW - low- and middle-income countries KW - AI tools KW - systematic review KW - case study KW - Thailand KW - computing machinery KW - academic experts KW - technology developers KW - health care providers KW - internet connectivity KW - data systems KW - low health data literacy KW - cybersecurity KW - standardized data formats KW - AI development KW - PRISMA N2 - Background: Health care systems in low- and middle-income countries (LMICs) can greatly benefit from artificial intelligence (AI) interventions in various use cases such as diagnostics, treatment, and public health monitoring but face significant challenges in sharing data for developing and deploying AI in health care. Objective: This study aimed to identify barriers and enablers to data sharing for AI in health care in LMICs and to test the relevance of these in a local context. Methods: First, we conducted a systematic literature search using PubMed, SCOPUS, Embase, Web of Science, and ACM using controlled vocabulary. Primary research studies, perspectives, policy landscape analyses, and commentaries performed in or involving an LMIC context were included. Studies that lacked a clear connection to health information exchange systems or were not reported in English were excluded from the review. Two reviewers independently screened titles and abstracts of the included articles and critically appraised each study. All identified barriers and enablers were classified according to 7 categories as per the predefined framework?technical, motivational, economic, political, legal and policy, ethical, social, organisational, and managerial. Second, we tested the local relevance of barriers and enablers in Thailand through stakeholder interviews with 15 academic experts, technology developers, regulators, policy makers, and health care providers. The interviewers took notes and analyzed data using framework analysis. Coding procedures were standardized to enhance the reliability of our approach. Coded data were reverified and themes were readjusted where necessary to avoid researcher bias. Results: We identified 22 studies, the majority of which were conducted across Africa (n=12, 55%) and Asia (n=6, 27%). The most important data-sharing challenges were unreliable internet connectivity, lack of equipment, poor staff and management motivation, uneven resource distribution, and ethical concerns. Possible solutions included improving IT infrastructure, enhancing funding, introducing user-friendly software, and incentivizing health care organizations and personnel to share data for AI-related tools. In Thailand, inconsistent data systems, limited staff time, low health data literacy, complex and unclear policies, and cybersecurity issues were important data-sharing challenges. Key solutions included building a conducive digital ecosystem?having shared data input platforms for health facilities to ensure data uniformity and to develop easy-to-understand consent forms, having standardized guidelines for data sharing, and having compensation policies for data breach victims. Conclusions: Although AI in LMICs has the potential to overcome health inequalities, these countries face technical, political, legal, policy, and organizational barriers to sharing data, which impede effective AI development and deployment. When tested in a local context, most of these barriers were relevant. Although our findings might not be generalizable to other contexts, this study can be used by LMICs as a framework to identify barriers and strengths within their health care systems and devise localized solutions for enhanced data sharing. Trial Registration: PROSPERO CRD42022360644; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=360644 UR - https://www.jmir.org/2025/1/e58338 UR - http://dx.doi.org/10.2196/58338 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/58338 ER - TY - JOUR AU - Marino, Antonio Carlos AU - Diaz Paz, Claudia PY - 2025/1/31 TI - Smart Contracts and Shared Platforms in Sustainable Health Care: Systematic Review JO - JMIR Med Inform SP - e58575 VL - 13 KW - health care KW - smart contracts KW - blockchain KW - security KW - privacy KW - supply chain KW - patient centricity KW - system trust KW - stakeholders N2 - Background: The benefits of smart contracts (SCs) for sustainable health care are a relatively recent topic that has gathered attention given its relationship with trust and the advantages of decentralization, immutability, and traceability introduced in health care. Nevertheless, more studies need to explore the role of SCs in this sector based on the frameworks propounded in the literature that reflect business logic that has been customized, automatized, and prioritized, as well as system trust. This study addressed this lacuna. Objective: This study aimed to provide a comprehensive understanding of SCs in health care based on reviewing the frameworks propounded in the literature. Methods: A structured literature review was performed based on the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) principles. One database?Web of Science (WoS)?was selected to avoid bias generated by database differences and data wrangling. A quantitative assessment of the studies based on machine learning and data reduction methodologies was complemented with a qualitative, in-depth, detailed review of the frameworks propounded in the literature. Results: A total of 70 studies, which constituted 18.7% (70/374) of the studies on this subject, met the selection criteria and were analyzed. A multiple correspondence analysis?with 74.44% of the inertia?produced 3 factors describing the advances in the topic. Two of them referred to the leading roles of SCs: (1) health care process enhancement and (2) assurance of patients? privacy protection. The first role included 6 themes, and the second one included 3 themes. The third factor encompassed the technical features that improve system efficiency. The in-depth review of these 3 factors and the identification of stakeholders allowed us to characterize the system trust in health care SCs. We assessed the risk of coverage bias, and good percentages of overlap were obtained?66% (49/74) of PubMed articles were also in WoS, and 88.3% (181/205) of WoS articles also appeared in Scopus. Conclusions: This comprehensive review allows us to understand the relevance of SCs and the potentiality of their use in patient-centric health care that considers more than technical aspects. It also provides insights for further research based on specific stakeholders, locations, and behaviors. UR - https://medinform.jmir.org/2025/1/e58575 UR - http://dx.doi.org/10.2196/58575 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/58575 ER - TY - JOUR AU - Soltani, Nazli AU - Dietz, Thilo AU - Ochterbeck, Doris AU - Dierkes, Jens AU - Restel, Katja AU - Christianson, Lara AU - De Santis, Karolina Karina AU - Zeeb, Hajo PY - 2025/1/28 TI - Digital Information Exchange Between the Public and Researchers in Health Studies: Scoping Review JO - J Med Internet Res SP - e63373 VL - 27 KW - health information KW - information exchange KW - communication KW - knowledge translation KW - dissemination KW - digital technology KW - research participant KW - scoping review N2 - Background: Information exchange regarding the scope and content of health studies is becoming increasingly important. Digital methods, including study websites, can facilitate such an exchange. Objective: This scoping review aimed to describe how digital information exchange occurs between the public and researchers in health studies. Methods: This scoping review was prospectively registered and adheres to the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) guidelines. Eligibility was defined using the population (public and researchers), concept (digital information exchange), and context (health studies) framework. Bibliographic databases (MEDLINE, PsycINFO, CINAHL, and Web of Science), bibliographies of the included studies, and Google Scholar were searched up to February 2024. Studies published in peer-reviewed journals were screened for inclusion based on the title, abstract, and full text. Data items charted from studies included bibliographic and PCC (Population, Concept, and Context) characteristics. Data were processed into categories that inductively emerged from the data and were synthesized into main themes using descriptive statistics. Results: Overall, 4072 records were screened, and 18 studies published between 2010 and 2021 were included. All studies evaluated or assessed the preferences for digital information exchange. The target populations included the public (mainly adults with any or specific diseases), researchers, or both. The digital information exchange methods included websites, emails, forums, platforms, social media, and portals. Interactivity (ie, if digital information exchange is or should be active or passive) was addressed in half of the studies. Exchange content included health information or data with the aim to inform, recruit, link, or gather innovative research ideas from participants in health studies. We identified 7 facilitators and 9 barriers to digital information exchange. The main facilitators were the consideration of any stakeholder perspectives and needs to clarify expectations and responsibilities, the use of modern or low-cost communication technologies and public-oriented language, and continuous communication of the health study process. The main barriers were that information exchange was not planned or not feasible due to inadequate resources, highly complex technical language was used, and ethical concerns (eg, breach of anonymity if study participants are brought together) were raised. Evidence gaps indicate that new studies should assess the methods and the receiver (ie, public) preferences and needs that are required to deliver and facilitate interactive digital information exchange. Conclusions: Few studies addressing digital information exchange in health studies could be identified in this review. There was little focus on interactivity in such an exchange. Digital information exchange was associated with more barriers than facilitators, suggesting that more effort is required to improve such an exchange between the public and researchers. Future studies should investigate interactive digital methods and the receiver preferences and needs required for such an exchange. UR - https://www.jmir.org/2025/1/e63373 UR - http://dx.doi.org/10.2196/63373 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/63373 ER - TY - JOUR AU - Alharbi, A. Abdullah AU - Aljerian, A. Nawfal AU - Binhotan, S. Meshary AU - Alghamdi, A. Hani AU - Alsultan, K. Ali AU - Arafat, S. Mohammed AU - Aldhabib, Abdulrahman AU - Alaska, A. Yasser AU - Alwahbi, B. Eid AU - Muaddi, A. Mohammed AU - Alqassim, Y. Ahmad AU - Horner, D. Ronnie PY - 2025/1/24 TI - Digital Surveillance of Mental Health Care Services in Saudi Arabia: Cross-Sectional Study of National e-Referral System Data JO - JMIR Public Health Surveill SP - e64257 VL - 11 KW - digital health KW - mental health KW - health policy KW - epidemiology KW - Saudi Arabia KW - SMARC KW - health care transformation KW - e-referral KW - Saudi Medical Appointments and Referrals Centre N2 - Background: Mental illness affects an estimated 25% of the global population, with treatment gaps persisting worldwide. The COVID-19 pandemic has exacerbated these challenges, leading to a significant increase in mental health issues globally. In Saudi Arabia, the lifetime prevalence of mental disorders is estimated at 34.2%, yet 86.1% of those with a 12-month mental disorder report no service use. To address these challenges, digital health solutions, particularly electronic referral (e-referral) systems, have emerged as powerful tools to improve care coordination and access. Saudi Arabia has pioneered the nationwide Saudi Medical Appointments and Referrals Centre (SMARC), a centralized e-referral system using artificial intelligence and predictive analytics. Objectives: This study aims to analyze Saudi Arabia?s novel nationwide e-referral system for mental health services, using SMARC platform data to examine referral patterns, and service accessibility. This study also aims to demonstrate how digital health technology can inform and improve mental health care delivery and policy making. Methods: This retrospective, cross-sectional study used secondary data from SMARC on 10,033 psychiatric e-referrals in Saudi Arabia during 2020?2021. Referrals were assessed by patient sociodemographic variables, geographic data, and e-referral characteristics including date, type, bed type, and reason for e-referral. Descriptive statistical analyses identified referral patterns, while regression modeling determined predictors of external referrals to other regions. Results: Analysis of 10,033 psychiatric e-referrals revealed that 58.99% (n=5918) were for patients aged 18?44 years, 63.93% (n=6414) were for men, and 87.10% (n=8739) were for Saudi nationals. The Western Business Unit generated 45.17% (n=4532) of all e-referral requests. Emergency cases were the most common type of referral overall, followed by routine inpatient and routine outpatient department referrals. However, in the Northern Business Unit, routine inpatient referrals were most frequent. Two-thirds of requests were for ward beds, while critical beds were rarely requested. ?Unavailable subspecialty? was the primary reason for referrals across all regions. The utilization of the mental health e-referral system varied across regions, with the Northern Border and Albaha regions showing the highest rates, while Madinah, Eastern, and Riyadh regions demonstrated lower use. Temporal analysis showed almost similar monthly patterns in 2020 and 2021. There was an overall increase in referrals in 2021 compared with 2020. Conclusions: This pioneering study of mental health e-referrals in Saudi Arabia demonstrates how digital health transformation, particularly through an e-referral system, has significantly enhanced access to mental health services nationwide in Saudi Arabia. The success of this digital initiative demonstrates how digital health solutions can transform health care access, particularly in mental health services, offering a valuable model for other health care systems. UR - https://publichealth.jmir.org/2025/1/e64257 UR - http://dx.doi.org/10.2196/64257 ID - info:doi/10.2196/64257 ER - TY - JOUR AU - Wei, Dongle AU - Gao, Pan AU - Zhai, Yunkai PY - 2025/1/22 TI - The Impact of Data Control and Delayed Discounting on the Public?s Willingness to Share Different Types of Health Care Data: Empirical Study JO - JMIR Med Inform SP - e66444 VL - 13 KW - health data control KW - delay discounting rate KW - mental accounting KW - health data KW - data sharing KW - willingness KW - patient-generated data KW - clinical medical data KW - disease prevention KW - precision medicine KW - health care KW - portability KW - accountability KW - app KW - web-based survey KW - data security KW - data privacy KW - mobile phone N2 - Background: Health data typically include patient-generated data and clinical medical data. Different types of data contribute to disease prevention, precision medicine, and the overall improvement of health care. With the introduction of regulations such as the Health Insurance Portability and Accountability Act (HIPAA), individuals play a key role in the sharing and application of personal health data. Objective: This study aims to explore the impact of different types of health data on users? willingness to share. Additionally, it analyzes the effect of data control and delay discounting rate on this process. Methods: The results of a web-based survey were analyzed to examine individuals? perceptions of sharing different types of health data and how data control and delay discounting rates influenced their decisions. We recruited participants for our study through the web-based platform ?Wenjuanxing.? After screening, we obtained 257 valid responses. Regression analysis was used to investigate the impact of data control, delayed discounting, and mental accounting on the public?s willingness to share different types of health care data. Results: Our findings indicate that the type of health data does not significantly affect the perceived benefits of data sharing. Instead, it negatively influences willingness to share by indirectly affecting data acquisition costs and perceived risks. Our results also show that data control reduces the perceived risks associated with sharing, while higher delay discounting rates lead to an overestimation of data acquisition costs and perceived risks. Conclusions: Individuals? willingness to share data is primarily influenced by costs. To promote the acquisition and development of personal health data, stakeholders should strengthen individuals? control over their data or provide direct short-term incentives. UR - https://medinform.jmir.org/2025/1/e66444 UR - http://dx.doi.org/10.2196/66444 ID - info:doi/10.2196/66444 ER - TY - JOUR AU - Kurita, Junko AU - Hori, Motomi AU - Yamaguchi, Sumiyo AU - Ogiwara, Aiko AU - Saito, Yurina AU - Sugiyama, Minako AU - Sunadori, Asami AU - Hayashi, Tomoko AU - Hara, Akane AU - Kawana, Yukari AU - Itoi, Youichi AU - Sugawara, Tamie AU - Sugishita, Yoshiyuki AU - Irie, Fujiko AU - Sakurai, Naomi PY - 2025/1/10 TI - Effectiveness of the Facility for Elderly Surveillance System (FESSy) in Two Public Health Center Jurisdictions in Japan: Prospective Observational Study JO - JMIR Med Inform SP - e58509 VL - 13 KW - early detection KW - facility for older people KW - outbreak KW - public health center KW - syndromic surveillance KW - Japan KW - older adults N2 - Background: Residents of facilities for older people are vulnerable to COVID-19 outbreaks. Nevertheless, timely recognition of outbreaks at facilities for older people at public health centers has been impossible in Japan since May 8, 2023, when the Japanese government discontinued aggressive countermeasures against COVID-19 because of the waning severity of the dominant Omicron strain. The Facility for Elderly Surveillance System (FESSy) has been developed to improve information collection. Objective: This study examined FESSy experiences and effectiveness in two public health center jurisdictions in Japan. Methods: This study assessed the use by public health centers of the detection mode of an automated AI detection system (ie, FESSy AI), as well as manual detection by the public health centers? staff (ie, FESSy staff) and direct reporting by facilities to the public health centers. We considered the following aspects: (1) diagnoses or symptoms, (2) numbers of patients as of their detection date, and (3) ultimate numbers of patients involved in incidents. Subsequently, effectiveness was assessed and compared based on detection modes. The study lasted from June 1, 2023, through January 2024. Results: In both areas, this study examined 31 facilities at which 87 incidents were detected. FESSy (AI or staff) detected significantly fewer patients than non-FESSy methods, that is, direct reporting to the public health center of the detection date and ultimate number of patients. Conclusions: FESSy was superior to direct reporting from facilities for the number of patients as of the detection date and for the ultimate outbreak size. UR - https://medinform.jmir.org/2025/1/e58509 UR - http://dx.doi.org/10.2196/58509 ID - info:doi/10.2196/58509 ER - TY - JOUR AU - Knight, Jo AU - Chandrabalan, Vardhan Vishnu AU - Emsley, A. Hedley C. PY - 2024/12/24 TI - Visualizing Patient Pathways and Identifying Data Repositories in a UK Neurosciences Center: Exploratory Study JO - JMIR Med Inform SP - e60017 VL - 12 KW - health data KW - business process monitoring notation KW - neurology KW - process monitoring KW - patient pathway KW - clinical pathway KW - patient care KW - EHR KW - electronic health record KW - dataset KW - questionnaire KW - patient data KW - NHS KW - National Health Service N2 - Background: Health and clinical activity data are a vital resource for research, improving patient care and service efficiency. Health care data are inherently complex, and their acquisition, storage, retrieval, and subsequent analysis require a thorough understanding of the clinical pathways underpinning such data. Better use of health care data could lead to improvements in patient care and service delivery. However, this depends on the identification of relevant datasets. Objective: We aimed to demonstrate the application of business process modeling notation (BPMN) to represent clinical pathways at a UK neurosciences center and map the clinical activity to corresponding data flows into electronic health records and other nonstandard data repositories. Methods: We used BPMN to map and visualize a patient journey and the subsequent movement and storage of patient data. After identifying several datasets that were being held outside of the standard applications, we collected information about these datasets using a questionnaire. Results: We identified 13 standard applications where neurology clinical activity was captured as part of the patient?s electronic health record including applications and databases for managing referrals, outpatient activity, laboratory data, imaging data, and clinic letters. We also identified 22 distinct datasets not within standard applications that were created and managed within the neurosciences department, either by individuals or teams. These were being used to deliver direct patient care and included datasets for tracking patient blood results, recording home visits, and tracking triage status. Conclusions: Mapping patient data flows and repositories allowed us to identify areas wherein the current electronic health record does not fulfill the needs of day-to-day patient care. Data that are being stored outside of standard applications represent a potential duplication in the effort and risks being overlooked. Future work should identify unmet data needs to inform correct data capture and centralization within appropriate data architectures. UR - https://medinform.jmir.org/2024/1/e60017 UR - http://dx.doi.org/10.2196/60017 ID - info:doi/10.2196/60017 ER - TY - JOUR AU - Grover, Ashoo AU - Nair, Saritha AU - Sharma, Saurabh AU - Gupta, Shefali AU - Shrivastava, Suyesh AU - Singh, Pushpendra AU - Kanungo, Srikanta AU - Ovung, Senthanro AU - Singh, Charan AU - Khan, Mabood Abdul AU - Sharma, Sandeep AU - Palo, Kumar Subrata AU - Chakma, Tapas AU - Bajaj, Anjali PY - 2024/12/20 TI - Strengthening Cause of Death Statistics in Selected Districts of 3 States in India: Protocol for an Uncontrolled, Before-After, Mixed Method Study JO - JMIR Res Protoc SP - e51493 VL - 13 KW - cause of death KW - Medical Certification of Cause of Death KW - capacity building KW - Civil Registration and Vital Statistics KW - training N2 - Background: Mortality statistics are vital for health policy development, epidemiological research, and health care service planning. A robust surveillance system is essential for obtaining vital information such as cause of death (CoD) information. Objective: This study aims to develop a comprehensive model to strengthen the CoD information in the selected study sites. The specific objectives are (1) to identify the best practices and challenges in the functioning of the Civil Registration and Vital Statistics (CRVS) system with respect to mortality statistics and CoD information; (2) to develop and implement interventions to strengthen the CoD information; (3) to evaluate the quality improvement of the Medical Certification of Cause of Death (MCCD); and (4) to improve the CoD information at the population level through verbal autopsy for noninstitutional deaths in the selected study sites. Methods: An uncontrolled, before-after, mixed method study will be conducted in 3 blocks located in the districts of 3 states (Madhya Pradesh, Uttar Pradesh, and Odisha) in India. A baseline assessment to identify the best practices and challenges in the functioning of the CRVS system, along with a quality assessment of the MCCD, will be conducted. An intervention informed by existing literature and the baseline assessment will be developed and implemented in the study sites. The major components of intervention will include a Training of Trainers workshop, orientation of stakeholders in the functioning of the CRVS system, training of physicians and medical officers in the MCCD, and training of community health workers in World Health Organization Verbal Autopsy 2022 instrument. Postintervention evaluation will be carried out to assess the impact made by the intervention on the availability and quality improvement of CoD information in the selected study sites. The outcome will be measured in terms of the quality improvement of the MCCD and the availability of CoD information at population level through verbal autopsy in the selected study sites. Results: The project has been funded, and regulatory approval has been obtained from the Institutional Ethics Committee. The data collection process began in May 2023. The duration of the study will be for 24 months. Conclusions: Our study is expected to provide a valuable contribution toward strengthening CoD information, which could be helpful for policy making and further research. The intervention model will be developed in collaboration with the existing functionaries of the health and CRVS systems in the selected study sites that are engaged in reporting and recording CoD information; this will ensure sustainability and provide lessons for upscaling, with the aim to improve the reporting of CoD information in the country. International Registered Report Identifier (IRRID): DERR1-10.2196/51493 UR - https://www.researchprotocols.org/2024/1/e51493 UR - http://dx.doi.org/10.2196/51493 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/51493 ER - TY - JOUR AU - Rådestad, Monica AU - Kanfjäll, Torkel AU - Lindström, Veronica PY - 2024/12/19 TI - Real-Time Triage, Position, and Documentation (TriPoD) During Medical Response to Major Incidents: Protocol for an Action Research Study JO - JMIR Res Protoc SP - e57819 VL - 13 KW - action research KW - decision support technique KW - information technology KW - medical response KW - major incident KW - management N2 - Background: There is a need to address the implementation of technological innovation into emergency medical services to facilitate and improve information exchange between prehospital emergency care providers, command centers, and hospitals during major incidents to enable better allocation of resources and minimize loss of life. At present, there is a lack of technology supporting real-time information sharing in managing major incidents to optimize the use of resources available. Objective: The aim of this protocol is to develop, design, and evaluate information technology innovations for use in medical response to major incidents. Methods: This study has a qualitative action research design. This research approach is suitable for developing and changing practice in health care settings since it is cyclical in nature and involves development, evaluation, redevelopment, and replanning. The qualitative data collection will include workshops, structured meetings, semistructured interviews, questionnaires, observations, and focus group interviews. This study assesses the use of a digital solution for real-time information sharing by involving 3 groups of indented users: prehospital emergency care personnel, hospital personnel, and designated duty officers with experience and specific knowledge in managing major incidents. This study will explore end users? experiences and needs, and a digital solution for prehospital and hospital settings will be developed in collaboration with technology producers. Results: The trial implementation and evaluation phase for this study is from April 2024 to May 2026. Interviews and questionnaires with end users were conducted during the planning phase. We have performed observations in connection with 2 major exercises in April 2024 and November 2024. The outcome of this analysis will form the basis for the design and development of a new information technology system. We aim to complete the observations in training sessions and exercises (phase 3) by September 2025, followed by modification of the technology solutions tested (phase 4) before dissemination in a scientific journal. Conclusions: This protocol includes several methods for data collection that will form the basis for the design and development process of a digital solution for real-time information sharing to support efficient management in major incidents based on the experiences and requirements of end users. The findings from this study will contribute to the limited research on users? perspectives and the development of digital solutions for real-time information during major incidents. International Registered Report Identifier (IRRID): PRR1-10.2196/57819 UR - https://www.researchprotocols.org/2024/1/e57819 UR - http://dx.doi.org/10.2196/57819 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/57819 ER - TY - JOUR AU - Badwal, Singh Randeep AU - Cavo, Paul AU - Panesar, Mandip PY - 2024/12/17 TI - Insights and Trends in Open Note Access: Retrospective Observational Study JO - J Med Internet Res SP - e55982 VL - 26 KW - open note trends KW - open notes KW - open note access KW - open note use, open note sex KW - open note specialty KW - clinical note views KW - patient portal KW - patients KW - trends KW - hospitals KW - engagement KW - retrospective observational study KW - outpatient KW - assessment KW - older patients KW - adults KW - pandemic KW - COVID-19 N2 - Background: As of 2021, at least 4 out of every 5 hospitals offered patients access to clinical notes via a web-based patient portal, a number that is expected to grow because of the 21st Century Cures Act. There is limited data on how open note use may have evolved over time or which types of clinical interactions were viewed most in the outpatient setting. Objective: This study aims to analyze trends in outpatient open note access over time; characterize usage in terms of age, sex, and clinical interaction type; and assess the method of access to help uncover areas of improvement in patient engagement and identify further areas of research. Methods: A retrospective observational study was conducted at Erie County Medical Center from November 1, 2021, to December 31, 2022, to coincide with the time that open notes went live. Outpatient note access and account logs were downloaded from the portal and combined into a single dataset consisting of 18,384 note accesses by 4615 users, with column headings of the patient index, sex, age, note title that was accessed, clinical interaction type, time stamp of note creation, time stamp of access, and method of access (web vs mobile). A separate table was created with sex data for all 35,273 portal accounts. Microsoft Excel and Microsoft Power Query were used to combine and analyze the data. Results: During the study period, 4615 portal users viewed 12,150 documents for a total of 18,384 times, averaging 2.6 notes per patient viewed 4 times. Only 13.1% (4615/35,273) of all portal inpatient and outpatient registrants viewed their outpatient notes. There was a female predominance in those who viewed notes (2926/4615, 63.4%; P<.001), while 56.8% (20,047/35,273) of all portal registrants were female. Users in their 30s and 50s accessed more notes than other age groups. The ratio of mobile-to-web access of notes tended to decrease as a function of increasing age, which was not observed in those aged ?90 years. Notes regarding COVID-19 assessments were the most accessed among all clinical interactions (4725/12,150, 38.9%). Overall, the number of users accessing notes reached a maximum of 1968 before declining to 1027 by the end of the study period. Conclusions: Open note access was largely dominated by COVID-19 assessments, and the number of users viewing their notes has declined over time as the pandemic subsided. Furthermore, female patients and those aged in their 30s as well as 50s viewed more notes than other groups. Finally, the percentage of notes viewed via a mobile device tended to decrease as a function of increasing age, showing that web-based access of open notes is an important modality for older patients. UR - https://www.jmir.org/2024/1/e55982 UR - http://dx.doi.org/10.2196/55982 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/55982 ER - TY - JOUR AU - Pearce, Eidenier Emily AU - Majid, Alina AU - Brown, Toniya AU - Shepherd, Forbes Rowan AU - Rising, Camella AU - Wilsnack, Catherine AU - Thompson, S. Ashley AU - Gilkey, B. Melissa AU - Ribisl, M. Kurt AU - Lazard, J. Allison AU - Han, KJ Paul AU - Werner-Lin, Allison AU - Hutson, P. Sadie AU - Savage, A. Sharon PY - 2024/12/16 TI - ?Crying in the Wilderness??The Use of Web-Based Support in Telomere Biology Disorders: Thematic Analysis JO - JMIR Form Res SP - e64343 VL - 8 KW - social media KW - dyskeratosis congenita KW - telomere biology disorder KW - health communication KW - qualitative KW - thematic analysis KW - web-based information KW - web-based support KW - telomere KW - biology disorder KW - social support KW - emotional support KW - genetic KW - internet-based KW - information-seeking KW - descriptive study KW - semistructured interview KW - adult KW - illness experience KW - psychosocial KW - digital health KW - health intervention KW - health informatics N2 - Background: Web-based information and social support are commonly used in rare disease communities where geographic dispersion and limited provider expertise complicate in-person support. We examined web-based resource use among caregivers of individuals with telomere biology disorders (TBDs), which are rare genetic conditions with long diagnostic odysseys and uncertain prognoses including multiorgan system cancer risk. Objective: This study explored internet-based information-seeking and social support practices and perspectives of patients with TBDs and their caregivers. Methods: Our qualitative descriptive study used semistructured interviews of patients with TBDs and caregivers. Data were transcribed verbatim and thematically analyzed by an interdisciplinary team. Results: A total of 32 adults completed interviews. Participant ages ranged from 27 to 74 years. The majority (n=28, 88%) were female, occupied multiple TBD roles (eg, patient and parent), and had undergone genetic testing. Most engaged in web-based information-seeking (n=29, 91%) and TBD-specific social media (n=26, 81%). Participants found web-based resources useful for information-seeking but reported privacy concerns and frustration with forming supportive relationships. Most participants described ambivalence toward web-based resource use, citing tensions between hunger for information versus distrust, empowerment versus overwhelm, disclosure versus privacy, and accessibility versus connection. Fluctuations in web-based support use arose from perceived harms, information saturation, or decreased relevance over the course of TBD illness experience. Conclusions: Individuals with TBDs and their caregivers reported frequent use of web-based informational and emotional support. However, ambivalence about the benefits and liabilities of web-based resources and persistent medical uncertainty may impact the adoption of and adherence to web-based support among patients with TBD and caregivers. Our findings suggest web-based psychosocial support should target long-term and multifaceted informational and emotional needs, be user-initiated, be offered alongside in-person formats, provide expert-informed information, and be attentive to personal privacy and evolving support needs of the TBD community. This study suggests web-based resources will be most effective in the TBD context when they achieve the following features: (1) offer a variety of ways to engage (eg, active and passive), (2) provide privacy protections in moderated ?safe spaces? designed for personal disclosure, (3) offer separate venues for informational versus emotional support, (4) combine web-based relationship formation with opportunities for in-person gathering, (5) provide information that is reliable, easy to access, and informed by medical professionals, (6) remain mindful of user distress, and (7) are responsive to variations in levels and types of engagement. Additionally, advocacy organizations may wish to avoid traditional social media platforms when designing safe spaces for web-based emotional support, instead pivoting to internet-based tools that minimize privacy threats and limit the perpetual public availability of shared information. UR - https://formative.jmir.org/2024/1/e64343 UR - http://dx.doi.org/10.2196/64343 UR - http://www.ncbi.nlm.nih.gov/pubmed/39680438 ID - info:doi/10.2196/64343 ER - TY - JOUR AU - Albers, W. Charlotte A. AU - Wieland-Jorna, Yvonne AU - de Bruijne, C. Martine AU - Smalbrugge, Martin AU - Joling, J. Karlijn AU - de Boer, E. Marike PY - 2024/12/13 TI - Enhancing Standardized and Structured Recording by Elderly Care Physicians for Reusing Electronic Health Record Data: Interview Study JO - JMIR Med Inform SP - e63710 VL - 12 KW - electronic health records KW - health information interoperability KW - health information exchange KW - reference standards KW - long-term care KW - nursing homes KW - medical records KW - attitude of health personnel KW - qualitative research KW - digital health N2 - Background: Elderly care physicians (ECPs) in nursing homes document patients? health, medical conditions, and the care provided in electronic health records (EHRs). However, much of these health data currently lack structure and standardization, limiting their potential for health information exchange across care providers and reuse for quality improvement, policy development, and scientific research. Enhancing this potential requires insight into the attitudes and behaviors of ECPs toward standardized and structured recording in EHRs. Objective: This study aims to answer why and how ECPs record their findings in EHRs and what factors influence them to record in a standardized and structured manner. The findings will be used to formulate recommendations aimed at enhancing standardized and structured data recording for the reuse of EHR data. Methods: Semistructured interviews were conducted with 13 ECPs working in Dutch nursing homes. We recruited participants through purposive sampling, aiming for diversity in age, gender, health care organization, and use of EHR systems. Interviews continued until we reached data saturation. Analysis was performed using inductive thematic analysis. Results: ECPs primarily use EHRs to document daily patient care, ensure continuity of care, and fulfill their obligation to record specific information for accountability purposes. The EHR serves as a record to justify their actions in the event of a complaint. In addition, some respondents also mentioned recording information for secondary purposes, such as research and quality improvement. Several factors were found to influence standardized and structured recording. At a personal level, it is crucial to experience the added value of standardized and structured recording. At the organizational level, clear internal guidelines and a focus on their implementation can have a substantial impact. At the level of the EHR system, user-friendliness, interoperability, and guidance were most frequently mentioned as being important. At a national level, the alignment of internal guidelines with overarching standards plays a pivotal role in encouraging standardized and structured recording. Conclusions: The results of our study are similar to the findings of previous research in hospital care and general practice. Therefore, long-term care can learn from solutions regarding standardized and structured recording in other health care sectors. The main motives for ECPs to record in EHRs are the daily patient care and ensuring continuity of care. Standardized and structured recording can be improved by aligning the recording method in EHRs with the primary care process. In addition, there are incentives for motivating ECPs to record in a standardized and structured way, mainly at the personal, organizational, EHR system, and national levels. UR - https://medinform.jmir.org/2024/1/e63710 UR - http://dx.doi.org/10.2196/63710 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/63710 ER - TY - JOUR AU - AboArab, A. Mohammed AU - Potsika, T. Vassiliki AU - Theodorou, Alexis AU - Vagena, Sylvia AU - Gravanis, Miltiadis AU - Sigala, Fragiska AU - Fotiadis, I. Dimitrios PY - 2024/12/9 TI - Advancing Progressive Web Applications to Leverage Medical Imaging for Visualization of Digital Imaging and Communications in Medicine and Multiplanar Reconstruction: Software Development and Validation Study JO - JMIR Med Inform SP - e63834 VL - 12 KW - medical image visualization KW - peripheral artery computed tomography imaging KW - multiplanar reconstruction KW - progressive web applications N2 - Background: In medical imaging, 3D visualization is vital for displaying volumetric organs, enhancing diagnosis and analysis. Multiplanar reconstruction (MPR) improves visual and diagnostic capabilities by transforming 2D images from computed tomography (CT) and magnetic resonance imaging into 3D representations. Web-based Digital Imaging and Communications in Medicine (DICOM) viewers integrated into picture archiving and communication systems facilitate access to pictures and interaction with remote data. However, the adoption of progressive web applications (PWAs) for web-based DICOM and MPR visualization remains limited. This paper addresses this gap by leveraging PWAs for their offline access and enhanced performance. Objective: This study aims to evaluate the integration of DICOM and MPR visualization into the web using PWAs, addressing challenges related to cross-platform compatibility, integration capabilities, and high-resolution image reconstruction for medical image visualization. Methods: Our paper introduces a PWA that uses a modular design for enhancing DICOM and MPR visualization in web-based medical imaging. By integrating React.js and Cornerstone.js, the application offers seamless DICOM image processing, ensures cross-browser compatibility, and delivers a responsive user experience across multiple devices. It uses advanced interpolation techniques to make volume reconstructions more accurate. This makes MPR analysis and visualization better in a web environment, thus promising a substantial advance in medical imaging analysis. Results: In our approach, the performance of DICOM- and MPR-based PWAs for medical image visualization and reconstruction was evaluated through comprehensive experiments. The application excelled in terms of loading time and volume reconstruction, particularly in Google Chrome, whereas Firefox showed superior performance in viewing slices. This study uses a dataset comprising 22 CT scans of peripheral artery patients to demonstrate the application?s robust performance, with Google Chrome outperforming other browsers in both the local area network and wide area network settings. In addition, the application?s accuracy in MPR reconstructions was validated with an error margin of <0.05 mm and outperformed the state-of-the-art methods by 84% to 98% in loading and volume rendering time. Conclusions: This paper highlights advancements in DICOM and MPR visualization using PWAs, addressing the gaps in web-based medical imaging. By exploiting PWA features such as offline access and improved performance, we have significantly advanced medical imaging technology, focusing on cross-platform compatibility, integration efficiency, and speed. Our application outperforms existing platforms for handling complex MPR analyses and accurate analysis of medical imaging as validated through peripheral artery CT imaging. UR - https://medinform.jmir.org/2024/1/e63834 UR - http://dx.doi.org/10.2196/63834 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/63834 ER - TY - JOUR AU - Varghese, Julian AU - Schuster, Alexander AU - Poschkamp, Broder AU - Yildirim, Kemal AU - Oehm, Johannes AU - Berens, Philipp AU - Müller, Sarah AU - Gervelmeyer, Julius AU - Koch, Lisa AU - Hoffmann, Katja AU - Sedlmayr, Martin AU - Kakkassery, Vinodh AU - Kohlbacher, Oliver AU - Merle, David AU - Bartz-Schmidt, Ulrich Karl AU - Ueffing, Marius AU - Stahl, Dana AU - Leddig, Torsten AU - Bialke, Martin AU - Hampf, Christopher AU - Hoffmann, Wolfgang AU - Berthe, Sebastian AU - Waltemath, Dagmar AU - Walter, Peter AU - Lipprandt, Myriam AU - Röhrig, Rainer AU - Storp, Julian Jens AU - Zimmermann, Alexander Julian AU - Holtrup, Lea AU - Brix, Tobias AU - Stahl, Andreas AU - Eter, Nicole PY - 2024/12/5 TI - EyeMatics: An Ophthalmology Use Case Within the German Medical Informatics Initiative JO - JMIR Med Inform SP - e60851 VL - 12 KW - digital ophthalmology KW - interoperability KW - precision ophthalmology KW - patient engagement KW - Germany KW - clinical use KW - intravitreal KW - injections KW - eye KW - treatment KW - patient data KW - framework KW - AI KW - artificial intelligence KW - biomarker KW - retinal KW - scan KW - user-centered KW - observational UR - https://medinform.jmir.org/2024/1/e60851 UR - http://dx.doi.org/10.2196/60851 ID - info:doi/10.2196/60851 ER - TY - JOUR AU - Nadav, Janna AU - Kaihlanen, Anu-Marja AU - Kujala, Sari AU - Keskimäki, Ilmo AU - Viitanen, Johanna AU - Salovaara, Samuel AU - Saukkonen, Petra AU - Vänskä, Jukka AU - Vehko, Tuulikki AU - Heponiemi, Tarja PY - 2024/11/21 TI - Factors Contributing to Successful Information System Implementation and Employee Well-Being in Health Care and Social Welfare Professionals: Comparative Cross-Sectional Study JO - JMIR Med Inform SP - e52817 VL - 12 KW - implementation KW - health information systems KW - client information systems KW - stress KW - healthcare professionals KW - social welfare professionals KW - clinician well-being KW - workplace stress N2 - Background: The integration of information systems in health care and social welfare organizations has brought significant changes in patient and client care. This integration is expected to offer numerous benefits, but simultaneously the implementation of health information systems and client information systems can also introduce added stress due to the increased time and effort required by professionals. Objective: This study aimed to examine whether professional groups and the factors that contribute to successful implementation (participation in information systems development and satisfaction with software providers? development work) are associated with the well-being of health care and social welfare professionals. Methods: Data were obtained from 3 national cross-sectional surveys (n=9240), which were carried out among Finnish health care and social welfare professionals (registered nurses, physicians, and social welfare professionals) in 2020?2021. Self-rated stress and stress related to information systems were used as indicators of well-being. Analyses were conducted using linear and logistic regression analysis. Results: Registered nurses were more likely to experience self-rated stress than physicians (odds ratio [OR] ?0.47; P>.001) and social welfare professionals (OR ?0.68; P<.001). They also had a higher likelihood of stress related to information systems than physicians (b=?.11; P<.001). Stress related to information systems was less prevalent among professionals who did not participate in information systems development work (b=?.14; P<.001). Higher satisfaction with software providers? development work was associated with a lower likelihood of self-rated stress (OR ?0.23; P<.001) and stress related to information systems (b=?.36 P<.001). When comparing the professional groups, we found that physicians who were satisfied with software providers? development work had a significantly lower likelihood of stress related to information systems (b=?.12; P<.001) compared with registered nurses and social welfare professionals. Conclusions: Organizations can enhance the well-being of professionals and improve the successful implementation of information systems by actively soliciting and incorporating professional feedback, dedicating time for information systems development, fostering collaboration with software providers, and addressing the unique needs of different professional groups. UR - https://medinform.jmir.org/2024/1/e52817 UR - http://dx.doi.org/10.2196/52817 ID - info:doi/10.2196/52817 ER - TY - JOUR AU - Patel, Mohammed Ahmed AU - Baxter, Weston AU - Porat, Talya PY - 2024/11/20 TI - Toward Guidelines for Designing Holistic Integrated Information Visualizations for Time-Critical Contexts: Systematic Review JO - J Med Internet Res SP - e58088 VL - 26 KW - visualization KW - design KW - holistic KW - integrated KW - time-critical KW - guidelines KW - pre-attentive processing KW - gestalt theory KW - situation awareness KW - decision-making KW - mobile phone N2 - Background: With the extensive volume of information from various and diverse data sources, it is essential to present information in a way that allows for quick understanding and interpretation. This is particularly crucial in health care, where timely insights into a patient?s condition can be lifesaving. Holistic visualizations that integrate multiple data variables into a single visual representation can enhance rapid situational awareness and support informed decision-making. However, despite the existence of numerous guidelines for different types of visualizations, this study reveals that there are currently no specific guidelines or principles for designing holistic integrated information visualizations that enable quick processing and comprehensive understanding of multidimensional data in time-critical contexts. Addressing this gap is essential for enhancing decision-making in time-critical scenarios across various domains, particularly in health care. Objective: This study aims to establish a theoretical foundation supporting the argument that holistic integrated visualizations are a distinct type of visualization for time-critical contexts and identify applicable design principles and guidelines that can be used to design for such cases. Methods: We systematically searched the literature for peer-reviewed research on visualization strategies, guidelines, and taxonomies. The literature selection followed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. The search was conducted across 6 databases: ACM Digital Library, Google Scholar, IEEE Xplore, PubMed, Scopus, and Web of Science. The search was conducted up to August 2024 using the terms (?visualisations? OR ?visualizations?) AND (?guidelines? OR ?taxonomy? OR ?taxonomies?), with studies restricted to the English language. Results: Of 936 papers, 46 (4.9%) were included in the final review. In total, 48% (22/46) related to providing a holistic understanding and overview of multidimensional data; 28% (13/46) focused on integrated presentation, that is, integrating or combining multidimensional data into a single visual representation; and 35% (16/46) pertained to time and designing for rapid information processing. In total, 65% (30/46) of the papers presented general information visualization or visual communication guidelines and principles. No specific guidelines or principles were found that addressed all the characteristics of holistic, integrated visualizations in time-critical contexts. A summary of the key guidelines and principles from the 46 papers was extracted, collated, and categorized into 60 guidelines that could aid in designing holistic integrated visualizations. These were grouped according to different characteristics identified in the systematic review (eg, gestalt principles, reduction, organization, abstraction, and task complexity) and further condensed into 5 main proposed guidelines. Conclusions: Holistic integrated information visualizations in time-critical domains are a unique use case requiring a unique set of design guidelines. Our proposed 5 main guidelines, derived from existing design theories and guidelines, can serve as a starting point to enable both holistic and rapid processing of information, facilitating better-informed decisions in time-critical contexts. UR - https://www.jmir.org/2024/1/e58088 UR - http://dx.doi.org/10.2196/58088 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/58088 ER - TY - JOUR AU - Willcockson, Ursula Irmgard AU - Valdes, Herman Ignacio PY - 2024/11/14 TI - Unintended Consequences of Data Sharing Under the Meaningful Use Program JO - JMIR Med Inform SP - e52675 VL - 12 KW - electronic health records KW - EHR KW - medical record KW - interoperability KW - health information interoperability KW - clinical burden KW - Medicare KW - Medicaid KW - reimbursement KW - data science KW - data governance KW - data breach KW - cybersecurity KW - privacy UR - https://medinform.jmir.org/2024/1/e52675 UR - http://dx.doi.org/10.2196/52675 ID - info:doi/10.2196/52675 ER - TY - JOUR AU - Smith, N. Shawna AU - Lanham, M. Michael S. AU - Seagull, Jacob F. AU - Fabbri, Morris AU - Dorsch, P. Michael AU - Jennings, Kathleen AU - Barnes, Geoffrey PY - 2024/11/8 TI - System-Wide, Electronic Health Record?Based Medication Alerts for Appropriate Prescribing of Direct Oral Anticoagulants: Pilot Randomized Controlled Trial JO - JMIR Form Res SP - e64674 VL - 8 KW - direct oral anticoagulants KW - electronic health record KW - medication safety KW - prescribing errors KW - pilot randomized controlled trial KW - alert system optimization KW - clinical decision support KW - EHR KW - randomized controlled trial KW - RCT KW - oral anticoagulants N2 - Background: While direct oral anticoagulants (DOACs) have improved oral anticoagulation management, inappropriate prescribing remains prevalent and leads to adverse drug events. Antithrombotic stewardship programs seek to enhance DOAC prescribing but require scalable and sustainable strategies. Objective: We present a pilot, prescriber-level randomized controlled trial to assess the effectiveness of electronic health record (EHR)?based medication alerts in a large health system. Methods: The pilot assessed prescriber responses to alerts for initial DOAC prescription errors (apixaban and rivaroxaban). A user-centered, multistage design process informed alert development, emphasizing clear indication, appropriate dosing based on renal function, and drug-drug interactions. Alerts appeared whenever a DOAC was being prescribed in a way that did not follow package label instructions. Clinician responses measured acceptability, accuracy, feasibility, and utilization of the alerts. Results: The study ran from August 1, 2022, through April 30, 2023. Only 1 prescriber requested trial exclusion, demonstrating acceptability. The error rate for false alerts due to incomplete data was 6.6% (16/243). Two scenarios with alert design and/or execution errors occurred but were quickly identified and resolved, underlining the importance of a responsive quality assurance process in EHR-based interventions. Trial feasibility issues related to alert-data capture were identified and resolved. Trial feasibility was also assessed with balanced randomization of prescribers and the inclusion of various alerts across both medications. Assessing utilization, 34.2% (83/243) of the encounters (with 134 prescribers) led to a prescription change. Conclusions: The pilot implementation study demonstrated the acceptability, accuracy, feasibility, and estimates of the utilization of EHR-based medication alerts for DOAC prescriptions and successfully established just-in-time randomization of prescribing clinicians. This pilot study sets the stage for large-scale, randomized implementation evaluations of EHR-based alerts to improve medication safety. Trial Registration: ClinicalTrials.gov NCT05351749; https://clinicaltrials.gov/study/NCT05351749 UR - https://formative.jmir.org/2024/1/e64674 UR - http://dx.doi.org/10.2196/64674 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/64674 ER - TY - JOUR AU - Brehmer, Alexander AU - Sauer, Martin Christopher AU - Salazar Rodríguez, Jayson AU - Herrmann, Kelsey AU - Kim, Moon AU - Keyl, Julius AU - Bahnsen, Hendrik Fin AU - Frank, Benedikt AU - Köhrmann, Martin AU - Rassaf, Tienush AU - Mahabadi, Amir-Abbas AU - Hadaschik, Boris AU - Darr, Christopher AU - Herrmann, Ken AU - Tan, Susanne AU - Buer, Jan AU - Brenner, Thorsten AU - Reinhardt, Christian Hans AU - Nensa, Felix AU - Gertz, Michael AU - Egger, Jan AU - Kleesiek, Jens PY - 2024/10/31 TI - Establishing Medical Intelligence?Leveraging Fast Healthcare Interoperability Resources to Improve Clinical Management: Retrospective Cohort and Clinical Implementation Study JO - J Med Internet Res SP - e55148 VL - 26 KW - clinical informatics KW - FHIR KW - real-world evidence KW - medical intelligence KW - interoperability KW - data exchange KW - clinical management KW - clinical decision-making KW - electronic health records KW - quality of care KW - quality improvement N2 - Background: FHIR (Fast Healthcare Interoperability Resources) has been proposed to enable health data interoperability. So far, its applicability has been demonstrated for selected research projects with limited data. Objective: This study aimed to design and implement a conceptual medical intelligence framework to leverage real-world care data for clinical decision-making. Methods: A Python package for the use of multimodal FHIR data (FHIRPACK [FHIR Python Analysis Conversion Kit]) was developed and pioneered in 5 real-world clinical use cases, that is, myocardial infarction, stroke, diabetes, sepsis, and prostate cancer. Patients were identified based on the ICD-10 (International Classification of Diseases, Tenth Revision) codes, and outcomes were derived from laboratory tests, prescriptions, procedures, and diagnostic reports. Results were provided as browser-based dashboards. Results: For 2022, a total of 1,302,988 patient encounters were analyzed. (1) Myocardial infarction: in 72.7% (261/359) of cases, medication regimens fulfilled guideline recommendations. (2) Stroke: out of 1277 patients, 165 received thrombolysis and 108 thrombectomy. (3) Diabetes: in 443,866 serum glucose and 16,180 glycated hemoglobin A1c measurements from 35,494 unique patients, the prevalence of dysglycemic findings was 39% (13,887/35,494). Among those with dysglycemia, diagnosis was coded in 44.2% (6138/13,887) of the patients. (4) Sepsis: In 1803 patients, Staphylococcus epidermidis was the primarily isolated pathogen (773/2672, 28.9%) and piperacillin and tazobactam was the primarily prescribed antibiotic (593/1593, 37.2%). (5) PC: out of 54, three patients who received radical prostatectomy were identified as cases with prostate-specific antigen persistence or biochemical recurrence. Conclusions: Leveraging FHIR data through large-scale analytics can enhance health care quality and improve patient outcomes across 5 clinical specialties. We identified (1) patients with sepsis requiring less broad antibiotic therapy, (2) patients with myocardial infarction who could benefit from statin and antiplatelet therapy, (3) patients who had a stroke with longer than recommended times to intervention, (4) patients with hyperglycemia who could benefit from specialist referral, and (5) patients with PC with early increases in cancer markers. UR - https://www.jmir.org/2024/1/e55148 UR - http://dx.doi.org/10.2196/55148 UR - http://www.ncbi.nlm.nih.gov/pubmed/39240144 ID - info:doi/10.2196/55148 ER - TY - JOUR AU - Ravaut, Mathieu AU - Zhao, Ruochen AU - Phung, Duy AU - Qin, Mengqi Vicky AU - Milovanovic, Dusan AU - Pienkowska, Anita AU - Bojic, Iva AU - Car, Josip AU - Joty, Shafiq PY - 2024/10/30 TI - Targeting COVID-19 and Human Resources for Health News Information Extraction: Algorithm Development and Validation JO - JMIR AI SP - e55059 VL - 3 KW - COVID-19 KW - SARS-CoV-2 KW - summary KW - summarize KW - news articles KW - deep learning KW - classification KW - summarization KW - machine learning KW - extract KW - extraction KW - news KW - media KW - NLP KW - natural language processing N2 - Background: Global pandemics like COVID-19 put a high amount of strain on health care systems and health workers worldwide. These crises generate a vast amount of news information published online across the globe. This extensive corpus of articles has the potential to provide valuable insights into the nature of ongoing events and guide interventions and policies. However, the sheer volume of information is beyond the capacity of human experts to process and analyze effectively. Objective: The aim of this study was to explore how natural language processing (NLP) can be leveraged to build a system that allows for quick analysis of a high volume of news articles. Along with this, the objective was to create a workflow comprising human-computer symbiosis to derive valuable insights to support health workforce strategic policy dialogue, advocacy, and decision-making. Methods: We conducted a review of open-source news coverage from January 2020 to June 2022 on COVID-19 and its impacts on the health workforce from the World Health Organization (WHO) Epidemic Intelligence from Open Sources (EIOS) by synergizing NLP models, including classification and extractive summarization, and human-generated analyses. Our DeepCovid system was trained on 2.8 million news articles in English from more than 3000 internet sources across hundreds of jurisdictions. Results: Rules-based classification with hand-designed rules narrowed the data set to 8508 articles with high relevancy confirmed in the human-led evaluation. DeepCovid?s automated information targeting component reached a very strong binary classification performance of 98.98 for the area under the receiver operating characteristic curve (ROC-AUC) and 47.21 for the area under the precision recall curve (PR-AUC). Its information extraction component attained good performance in automatic extractive summarization with a mean Recall-Oriented Understudy for Gisting Evaluation (ROUGE) score of 47.76. DeepCovid?s final summaries were used by human experts to write reports on the COVID-19 pandemic. Conclusions: It is feasible to synergize high-performing NLP models and human-generated analyses to benefit open-source health workforce intelligence. The DeepCovid approach can contribute to an agile and timely global view, providing complementary information to scientific literature. UR - https://ai.jmir.org/2024/1/e55059 UR - http://dx.doi.org/10.2196/55059 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/55059 ER - TY - JOUR AU - Barker, Wesley AU - Chang, Wei AU - Everson, Jordan AU - Gabriel, Meghan AU - Patel, Vaishali AU - Richwine, Chelsea AU - Strawley, Catherine PY - 2024/10/28 TI - The Evolution of Health Information Technology for Enhanced Patient-Centric Care in the United States: Data-Driven Descriptive Study JO - J Med Internet Res SP - e59791 VL - 26 KW - interoperability KW - e-prescribing KW - electronic public health reporting KW - patient access to health information KW - electronic health records KW - health IT N2 - Background: Health information technology (health IT) has revolutionized health care in the United States through interoperable clinical care data exchange, e-prescribing, electronic public health reporting, and electronic patient access to health information. Objective: This study aims to examine progress in health IT adoption and its alignment with the Office of the Assistant Secretary for Technology Policy/Office of the National Coordinator for Health IT (ASTP's) mission to enhance health care through data access and exchange. Methods: This study leverages data on end users of health IT to capture trends in engagement in interoperable clinical care data exchange (ability to find, send, receive, and integrate information from outside organizations), e-prescribing, electronic public health reporting, and capabilities to enable patient access to electronic health information. Data were primarily sourced from the American Hospital Association Annual Survey IT Supplement (2008 to 2023), Surescripts e-prescribing use data (2008 to 2023), the National Cancer Institute?s Health Information National Trends Survey (2014 to 2022), and the National Center for Health Statistics? National Electronic Health Records Survey (2009 to 2023). Results: Since 2009, there has been a 10-fold increase in electronic health record (EHR) use among hospitals and a 5-fold increase among physicians. This enabled the interoperable exchange of electronic health information, e- prescribing, electronic public health data exchange, and the means for patients and their caregivers to access crucial personal health information digitally. As of 2023, 70% of hospitals are interoperable, with many providers integrated within EHR systems. Nearly all pharmacies and 92% of prescribers possess e-prescribing capabilities, an 85%-point increase since 2008. In 2013, 40% of hospitals and one-third of physicians allowed patients to view their online medical records. Patient access has improved, with 97% of hospitals and 65% of physicians possessing EHRs that enable patients to access their online medical records. As of 2022, three-fourths of individuals report being offered access to patient portals, and over half (57%) report engaging with their health information through their patient portal. Electronic public health reporting has also seen an increase, with most hospitals and physicians actively engaged in key reporting types. Conclusions: Federal incentives have contributed to the widespread adoption of EHRs and broad digitization in health care, while efforts to promote interoperability have encouraged collaboration across health care entities. As a result, interoperable clinical care data exchange, e-prescribing, electronic public health reporting, and patient access to health information have grown substantially over the past quarter century and have been shown to improve health care outcomes. However, interoperability hurdles, usability issues, data security concerns, and inequitable patient access persist. Addressing these issues will require collaborative efforts among stakeholders to promote data standardization, implement governance structures, and establish robust health information exchange networks. UR - https://www.jmir.org/2024/1/e59791 UR - http://dx.doi.org/10.2196/59791 UR - http://www.ncbi.nlm.nih.gov/pubmed/39466303 ID - info:doi/10.2196/59791 ER - TY - JOUR AU - Kruse, Jesse AU - Wiedekopf, Joshua AU - Kock-Schoppenhauer, Ann-Kristin AU - Essenwanger, Andrea AU - Ingenerf, Josef AU - Ulrich, Hannes PY - 2024/10/18 TI - A Generic Transformation Approach for Complex Laboratory Data Using the Fast Healthcare Interoperability Resources Mapping Language: Method Development and Implementation JO - JMIR Med Inform SP - e57569 VL - 12 KW - FHIR KW - StructureMaps KW - FHIR mapping language KW - laboratory data KW - mapping KW - standardization KW - data science KW - healthcare system KW - HIS KW - information system KW - electronic healthcare record KW - health care system KW - electronic health record KW - health information system N2 - Background: Reaching meaningful interoperability between proprietary health care systems is a ubiquitous task in medical informatics, where communication servers are traditionally used for referring and transforming data from the source to target systems. The Mirth Connect Server, an open-source communication server, offers, in addition to the exchange functionality, functions for simultaneous manipulation of data. The standard Fast Healthcare Interoperability Resources (FHIR) has recently become increasingly prevalent in national health care systems. FHIR specifies its own standardized mechanisms for transforming data structures using StructureMaps and the FHIR mapping language (FML). Objective: In this study, a generic approach is developed, which allows for the application of declarative mapping rules defined using FML in an exchangeable manner. A transformation engine is required to execute the mapping rules. Methods: FHIR natively defines resources to support the conversion of instance data, such as an FHIR StructureMap. This resource encodes all information required to transform data from a source system to a target system. In our approach, this information is defined in an implementation-independent manner using FML. Once the mapping has been defined, executable Mirth channels are automatically generated from the resources containing the mapping in JavaScript format. These channels can then be deployed to the Mirth Connect Server. Results: The resulting tool is called FML2Mirth, a Java-based transformer that derives Mirth channels from detailed declarative mapping rules based on the underlying StructureMaps. Implementation of the translate functionality is provided by the integration of a terminology server, and to achieve conformity with existing profiles, validation via the FHIR validator is built in. The system was evaluated for its practical use by transforming Labordatenträger version 2 (LDTv.2) laboratory results into Medical Information Object (Medizinisches Informationsobjekt) laboratory reports in accordance with the National Association of Statutory Health Insurance Physicians? specifications and into the HL7 (Health Level Seven) Europe Laboratory Report. The system could generate complex structures, but LDTv.2 lacks some information to fully comply with the specification. Conclusions: The tool for the auto-generation of Mirth channels was successfully presented. Our tests reveal the feasibility of using the complex structures of the mapping language in combination with a terminology server to transform instance data. Although the Mirth Server and the FHIR are well established in medical informatics, the combination offers space for more research, especially with regard to FML. Simultaneously, it can be stated that the mapping language still has implementation-related shortcomings that can be compensated by Mirth Connect as a base technology. UR - https://medinform.jmir.org/2024/1/e57569 UR - http://dx.doi.org/10.2196/57569 ID - info:doi/10.2196/57569 ER - TY - JOUR AU - Rosenau, Lorenz AU - Gruendner, Julian AU - Kiel, Alexander AU - Köhler, Thomas AU - Schaffer, Bastian AU - Majeed, W. Raphael PY - 2024/10/14 TI - Bridging Data Models in Health Care With a Novel Intermediate Query Format for Feasibility Queries: Mixed Methods Study JO - JMIR Med Inform SP - e58541 VL - 12 KW - feasibility KW - FHIR KW - CQL KW - eligibility criteria KW - clinical research KW - intermediate query format KW - healthcare interoperability KW - cohort definition KW - query KW - queries KW - interoperability KW - interoperable KW - informatics KW - portal KW - portals KW - implementation KW - develop KW - development KW - ontology KW - ontologies KW - JSON N2 - Background: To advance research with clinical data, it is essential to make access to the available data as fast and easy as possible for researchers, which is especially challenging for data from different source systems within and across institutions. Over the years, many research repositories and data standards have been created. One of these is the Fast Healthcare Interoperability Resources (FHIR) standard, used by the German Medical Informatics Initiative (MII) to harmonize and standardize data across university hospitals in Germany. One of the first steps to make these data available is to allow researchers to create feasibility queries to determine the data availability for a specific research question. Given the heterogeneity of different query languages to access different data across and even within standards such as FHIR (eg, CQL and FHIR Search), creating an intermediate query syntax for feasibility queries reduces the complexity of query translation and improves interoperability across different research repositories and query languages. Objective: This study describes the creation and implementation of an intermediate query syntax for feasibility queries and how it integrates into the federated German health research portal (Forschungsdatenportal Gesundheit) and the MII. Methods: We analyzed the requirements for feasibility queries and the feasibility tools that are currently available in research repositories. Based on this analysis, we developed an intermediate query syntax that can be easily translated into different research repository?specific query languages. Results: The resulting Clinical Cohort Definition Language (CCDL) for feasibility queries combines inclusion criteria in a conjunctive normal form and exclusion criteria in a disjunctive normal form, allowing for additional filters like time or numerical restrictions. The inclusion and exclusion results are combined via an expression to specify feasibility queries. We defined a JSON schema for the CCDL, generated an ontology, and demonstrated the use and translatability of the CCDL across multiple studies and real-world use cases. Conclusions: We developed and evaluated a structured query syntax for feasibility queries and demonstrated its use in a real-world example as part of a research platform across 39 German university hospitals. UR - https://medinform.jmir.org/2024/1/e58541 UR - http://dx.doi.org/10.2196/58541 ID - info:doi/10.2196/58541 ER - TY - JOUR AU - Chen, Tingting AU - Tang, Xiaofen AU - Xu, Min AU - Jiang, Yue AU - Zheng, Fengyan PY - 2024/10/14 TI - Application of Information Link Control in Surgical Specimen Near-Miss Events in a South China Hospital: Nonrandomized Controlled Study JO - JMIR Med Inform SP - e52722 VL - 12 KW - near misses KW - technical barriers KW - process barriers KW - surgical specimens KW - information N2 - Background: Information control is a promising approach for managing surgical specimens. However, there is limited research evidence on surgical near misses. This is particularly true in the closed loop of information control for each link. Objective: A new model of surgical specimen process management is further constructed, and a safe operating room nursing practice environment is created by intercepting specimen near-miss events through information safety barriers. Methods: In a large hospital in China, 84,289 surgical specimens collected in the conventional information specimen management mode from January to December 2021 were selected as the control group, and 99,998 surgical specimens collected in the information safety barrier control surgical specimen management mode from January to December 2022 were selected as the improvement group. The incidence of near misses, the qualified rate of pathological specimen fixation, and the average time required for specimen fixation were compared under the 2 management modes. The causes of 2 groups of near misses were analyzed and the near misses of information safety barrier control surgical specimens were studied. Results: Under the information-based safety barrier control surgical specimen management model, the incidence of adverse events in surgical specimens was reduced, the reporting of near-miss events in surgical specimens was improved by 100%, the quality control quality management of surgical specimens was effectively improved, the pass rate of surgical pathology specimen fixation was improved, and the meantime for surgical specimen fixation was shortened, with differences considered statistically significant at P<.05. Conclusions: Our research has developed a new mode of managing the surgical specimen process. This mode can prevent errors in approaching specimens by implementing information security barriers, thereby enhancing the quality of specimen management, ensuring the safety of medical procedures, and improving the quality of hospital services. UR - https://medinform.jmir.org/2024/1/e52722 UR - http://dx.doi.org/10.2196/52722 ID - info:doi/10.2196/52722 ER - TY - JOUR AU - Cao, Teng AU - Chen, Zhi AU - Nakayama, Masaharu PY - 2024/10/9 TI - Enhancing the Functionalities of Personal Health Record Systems: Empirical Study Based on the HL7 Personal Health Record System Functional Model Release 1 JO - JMIR Med Inform SP - e56735 VL - 12 KW - fast healthcare interoperability resources KW - logical observation identifiers names and codes KW - personal health record system functional model KW - personal health records N2 - Background: The increasing demand for personal health record (PHR) systems is driven by individuals? desire to actively manage their health care. However, the limited functionality of current PHR systems has affected users? willingness to adopt them, leading to lower-than-expected usage rates. The HL7 (Health Level Seven) PHR System Functional Model (PHR-S FM) was proposed to address this issue, outlining all possible functionalities in PHR systems. Although the PHR-S FM provides a comprehensive theoretical framework, its practical effectiveness and applicability have not been fully explored. Objective: This study aimed to design and develop a tethered PHR prototype in accordance with the guidelines of the PHR-S FM. It sought to explore the feasibility of applying the PHR-S FM in PHR systems by comparing the prototype with the results of previous research. Methods: The PHR-S FM profile was defined to meet broad clinical data management requirements based on previous research. We designed and developed a PHR prototype as a web application using the Fast Healthcare Interoperability Resources R4 (FHIR) and Logical Observation Identifiers Names and Codes (LOINC) coding system for interoperability and data consistency. We validated the prototype using the Synthea dataset, which provided realistic synthetic medical records. In addition, we compared the results produced by the prototype with those of previous studies to evaluate the feasibility and implementation of the PHR-S FM framework. Results: The PHR prototype was developed based on the PHR-S FM profile. We verified its functionality by demonstrating its ability to synchronize data with the FHIR server, effectively managing and displaying various health data types. Validation using the Synthea dataset confirmed the prototype?s accuracy, achieving 100% coverage across 1157 data items. A comparison with the findings of previous studies indicated the feasibility of implementing the PHR-S FM and highlighted areas for future research and improvements. Conclusions: The results of this study offer valuable insights into the potential for practical application and broad adoption of the PHR-S FM in real-world health care settings. UR - https://medinform.jmir.org/2024/1/e56735 UR - http://dx.doi.org/10.2196/56735 ID - info:doi/10.2196/56735 ER - TY - JOUR AU - Suzumoto, Jun AU - Mori, Yukiko AU - Kuroda, Tomohiro PY - 2024/10/9 TI - Health Care Worker Usage of Large-Scale Health Information Exchanges in Japan: User-Level Audit Log Analysis Study JO - JMIR Med Inform SP - e56263 VL - 12 KW - health information exchange KW - audit log KW - Japan KW - HIE KW - audit KW - logs KW - usage KW - medical informatics KW - rate KW - hospitals KW - electronic health record N2 - Background: Over 200 health information exchanges (HIEs) are currently operational in Japan. The most common feature of HIEs is remote on-demand viewing or searching of aggregated patient health data from multiple institutions. However, the usage of this feature by individual users and institutions remains unknown. Objective: This study aims to understand usage of the on-demand patient data viewing feature of large-scale HIEs by individual health care workers and institutions in Japan. Methods: We conducted audit log analyses of large-scale HIEs. The research subjects were HIEs connected to over 100 institutions and with over 10,000 patients. Each health care worker?s profile and audit log data for HIEs were collected. We conducted four types of analyses on the extracted audit log. First, we calculated the ratio of the number of days of active HIE use for each hospital-affiliated doctor account. Second, we calculated cumulative monthly usage days of HIEs by each institution in financial year (FY) 2021/22. Third, we calculated each facility type?s monthly active institution ratio in FY2021/22. Fourth, we compared the monthly active institution ratio by medical institution for each HIE and the proportion of cumulative usage days by user type for each HIE. Results: We identified 24 HIEs as candidates for data collection and we analyzed data from 7 HIEs. Among hospital doctors, 93.5% (7326/7833) had never used HIEs during the available period in FY2021/22, while 19 doctors used them at least 30% of days. The median (IQR) monthly active institution ratios were 0.482 (0.470?0.487) for hospitals, 0.243 (0.230?0.247) for medical clinics, and 0.030 (0.024?0.048) for dental clinics. In 51.9% (1781/3434) of hospitals, the cumulative monthly usage days of HIEs was 0, while in 26.8% (921/3434) of hospitals, it was between 1 and 10, and in 3% (103/3434) of hospitals, it was 100 or more. The median (IQR) monthly active institution ratio in medical institutions was 0.511 (0.487?0.529) for the most used HIE and 0.109 (0.0927?0.117) for the least used. The proportion of cumulative usage days of HIE by user type was complex for each HIE, and no consistent trends could be discerned. Conclusions: In the large-scale HIEs surveyed in this study, the overall usage of the on-demand patient data viewing feature was low, consistent with past official reports. User-level analyses of audit logs revealed large disparities in the number of days of HIE use among health care workers and institutions. There were also large disparities in HIE use by facility type or HIE; the percentage of cumulative HIE usage days by user type also differed by HIE. This study indicates the need for further research into why there are large disparities in demand for HIEs in Japan as well as the need to design comprehensive audit logs that can be matched with other official datasets. UR - https://medinform.jmir.org/2024/1/e56263 UR - http://dx.doi.org/10.2196/56263 ID - info:doi/10.2196/56263 ER - TY - JOUR AU - Hu, Zhengyong AU - Wang, Anran AU - Duan, Yifan AU - Zhou, Jiayin AU - Hu, Wanfei AU - Wu, Sizhu PY - 2024/9/30 TI - Toward Better Semantic Interoperability of Data Element Repositories in Medicine: Analysis Study JO - JMIR Med Inform SP - e60293 VL - 12 KW - data element repository KW - FAIR KW - ISO/IEC 11179 KW - metadata KW - semantic interoperability N2 - Background: Data element repositories facilitate high-quality medical data sharing by standardizing data and enhancing semantic interoperability. However, the application of repositories is confined to specific projects and institutions. Objective: This study aims to explore potential issues and promote broader application of data element repositories within the medical field by evaluating and analyzing typical repositories. Methods: Following the inclusion of 5 data element repositories through a literature review, a novel analysis framework consisting of 7 dimensions and 36 secondary indicators was constructed and used for evaluation and analysis. Results: The study?s results delineate the unique characteristics of different repositories and uncover specific issues in their construction. These issues include the absence of data reuse protocols and insufficient information regarding the application scenarios and efficacy of data elements. The repositories fully comply with only 45% (9/20) of the subprinciples for Findable and Reusable in the FAIR principle, while achieving a 90% (19/20 subprinciples) compliance rate for Accessible and 67% (10/15 subprinciples) for Interoperable. Conclusions: The recommendations proposed in this study address the issues to improve the construction and application of repositories, offering valuable insights to data managers, computer experts, and other pertinent stakeholders. UR - https://medinform.jmir.org/2024/1/e60293 UR - http://dx.doi.org/10.2196/60293 UR - http://www.ncbi.nlm.nih.gov/pubmed/39348178 ID - info:doi/10.2196/60293 ER - TY - JOUR AU - Tabari, Parinaz AU - Costagliola, Gennaro AU - De Rosa, Mattia AU - Boeker, Martin PY - 2024/9/24 TI - State-of-the-Art Fast Healthcare Interoperability Resources (FHIR)?Based Data Model and Structure Implementations: Systematic Scoping Review JO - JMIR Med Inform SP - e58445 VL - 12 KW - data model KW - Fast Healthcare Interoperability Resources KW - FHIR KW - interoperability KW - modeling KW - PRISMA N2 - Background: Data models are crucial for clinical research as they enable researchers to fully use the vast amount of clinical data stored in medical systems. Standardized data and well-defined relationships between data points are necessary to guarantee semantic interoperability. Using the Fast Healthcare Interoperability Resources (FHIR) standard for clinical data representation would be a practical methodology to enhance and accelerate interoperability and data availability for research. Objective: This research aims to provide a comprehensive overview of the state-of-the-art and current landscape in FHIR-based data models and structures. In addition, we intend to identify and discuss the tools, resources, limitations, and other critical aspects mentioned in the selected research papers. Methods: To ensure the extraction of reliable results, we followed the instructions of the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist. We analyzed the indexed articles in PubMed, Scopus, Web of Science, IEEE Xplore, the ACM Digital Library, and Google Scholar. After identifying, extracting, and assessing the quality and relevance of the articles, we synthesized the extracted data to identify common patterns, themes, and variations in the use of FHIR-based data models and structures across different studies. Results: On the basis of the reviewed articles, we could identify 2 main themes: dynamic (pipeline-based) and static data models. The articles were also categorized into health care use cases, including chronic diseases, COVID-19 and infectious diseases, cancer research, acute or intensive care, random and general medical notes, and other conditions. Furthermore, we summarized the important or common tools and approaches of the selected papers. These items included FHIR-based tools and frameworks, machine learning approaches, and data storage and security. The most common resource was ?Observation? followed by ?Condition? and ?Patient.? The limitations and challenges of developing data models were categorized based on the issues of data integration, interoperability, standardization, performance, and scalability or generalizability. Conclusions: FHIR serves as a highly promising interoperability standard for developing real-world health care apps. The implementation of FHIR modeling for electronic health record data facilitates the integration, transmission, and analysis of data while also advancing translational research and phenotyping. Generally, FHIR-based exports of local data repositories improve data interoperability for systems and data warehouses across different settings. However, ongoing efforts to address existing limitations and challenges are essential for the successful implementation and integration of FHIR data models. UR - https://medinform.jmir.org/2024/1/e58445 UR - http://dx.doi.org/10.2196/58445 UR - http://www.ncbi.nlm.nih.gov/pubmed/39316433 ID - info:doi/10.2196/58445 ER - TY - JOUR AU - Ohlsen, Tessa AU - Ingenerf, Josef AU - Essenwanger, Andrea AU - Drenkhahn, Cora PY - 2024/9/17 TI - PCEtoFHIR: Decomposition of Postcoordinated SNOMED CT Expressions for Storage as HL7 FHIR Resources JO - JMIR Med Inform SP - e57853 VL - 12 KW - SNOMED CT KW - HL7 FHIR KW - TermInfo KW - postcoordination KW - semantic interoperability KW - terminology KW - OWL KW - semantic similarity N2 - Background: To ensure interoperability, both structural and semantic standards must be followed. For exchanging medical data between information systems, the structural standard FHIR (Fast Healthcare Interoperability Resources) has recently gained popularity. Regarding semantic interoperability, the reference terminology SNOMED Clinical Terms (SNOMED CT), as a semantic standard, allows for postcoordination, offering advantages over many other vocabularies. These postcoordinated expressions (PCEs) make SNOMED CT an expressive and flexible interlingua, allowing for precise coding of medical facts. However, this comes at the cost of increased complexity, as well as challenges in storage and processing. Additionally, the boundary between semantic (terminology) and structural (information model) standards becomes blurred, leading to what is known as the TermInfo problem. Although often viewed critically, the TermInfo overlap can also be explored for its potential benefits, such as enabling flexible transformation of parts of PCEs. Objective: In this paper, an alternative solution for storing PCEs is presented, which involves combining them with the FHIR data model. Ultimately, all components of a PCE should be expressible solely through precoordinated concepts that are linked to the appropriate elements of the information model. Methods: The approach involves storing PCEs decomposed into their components in alignment with FHIR resources. By utilizing the Web Ontology Language (OWL) to generate an OWL ClassExpression, and combining it with an external reasoner and semantic similarity measures, a precoordinated SNOMED CT concept that most accurately describes the PCE is identified as a Superconcept. In addition, the nonmatching attribute relationships between the Superconcept and the PCE are identified as the ?Delta.? Once SNOMED CT attributes are manually mapped to FHIR elements, FHIRPath expressions can be defined for both the Superconcept and the Delta, allowing the identified precoordinated codes to be stored within FHIR resources. Results: A web application called PCEtoFHIR was developed to implement this approach. In a validation process with 600 randomly selected precoordinated concepts, the formal correctness of the generated OWL ClassExpressions was verified. Additionally, 33 PCEs were used for two separate validation tests. Based on these validations, it was demonstrated that a previously proposed semantic similarity calculation is suitable for determining the Superconcept. Additionally, the 33 PCEs were used to confirm the correct functioning of the entire approach. Furthermore, the FHIR StructureMaps were reviewed and deemed meaningful by FHIR experts. Conclusions: PCEtoFHIR offers services to decompose PCEs for storage within FHIR resources. When creating structure mappings for specific subdomains of SNOMED CT concepts (eg, allergies) to desired FHIR profiles, the use of SNOMED CT Expression Templates has proven highly effective. Domain experts can create templates with appropriate mappings, which can then be easily reused in a constrained manner by end users. UR - https://medinform.jmir.org/2024/1/e57853 UR - http://dx.doi.org/10.2196/57853 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/57853 ER - TY - JOUR AU - Ferreira, Diana AU - Neto, Cristiana AU - Hak, Francini AU - Abelha, António AU - Santos, Manuel AU - Machado, José PY - 2024/9/16 TI - Standardizing Corneal Transplantation Records Using openEHR: Case Study JO - JMIR Med Inform SP - e48407 VL - 12 KW - electronic health record KW - EHR KW - corneal transplantation KW - keratoplasty KW - openEHR KW - data representation KW - data exchange KW - templates KW - archetypes KW - forms KW - standardization N2 - Background: Corneal transplantation, also known as keratoplasty, is a widely performed surgical procedure that aims to restore vision in patients with corneal damage. The success of corneal transplantation relies on the accurate and timely management of patient information, which can be enhanced using electronic health records (EHRs). However, conventional EHRs are often fragmented and lack standardization, leading to difficulties in information access and sharing, increased medical errors, and decreased patient safety. In the wake of these problems, there is a growing demand for standardized EHRs that can ensure the accuracy and consistency of patient data across health care organizations. Objective: This paper proposes the use of openEHR structures for standardizing corneal transplantation records. The main objective of this research was to improve the quality and interoperability of EHRs in corneal transplantation, making it easier for health care providers to capture, share, and analyze clinical information. Methods: A series of sequential steps were carried out in this study to implement standardized clinical records using openEHR specifications. These specifications furnish a methodical approach that ascertains the development of high-quality clinical records. In broad terms, the methodology followed encompasses the conduction of meetings with health care professionals and the modeling of archetypes, templates, forms, decision rules, and work plans. Results: This research resulted in a tailored solution that streamlines health care delivery and meets the needs of medical professionals involved in the corneal transplantation process while seamlessly aligning with contemporary clinical practices. The proposed solution culminated in the successful integration within a Portuguese hospital of 3 key components of openEHR specifications: forms, Decision Logic Modules, and Work Plans. A statistical analysis of data collected from May 1, 2022, to March 31, 2023, allowed for the perception of the use of the new technologies within the corneal transplantation workflow. Despite the completion rate being only 63.9% (530/830), which can be explained by external factors such as patient health and availability of donor organs, there was an overall improvement in terms of task control and follow-up of the patients? clinical process. Conclusions: This study shows that the adoption of openEHR structures represents a significant step forward in the standardization and optimization of corneal transplantation records. It offers a detailed demonstration of how to implement openEHR specifications and highlights the different advantages of standardizing EHRs in the field of corneal transplantation. Furthermore, it serves as a valuable reference for researchers and practitioners who are interested in advancing and improving the exploitation of EHRs in health care. UR - https://medinform.jmir.org/2024/1/e48407 UR - http://dx.doi.org/10.2196/48407 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/48407 ER - TY - JOUR AU - Faisal, Putra Hiro AU - Nakayama, Masaharu PY - 2024/8/28 TI - Implementation of the World Health Organization Minimum Dataset for Emergency Medical Teams to Create Disaster Profiles for the Indonesian SATUSEHAT Platform Using Fast Healthcare Interoperability Resources: Development and Validation Study JO - JMIR Med Inform SP - e59651 VL - 12 KW - WHO EMT MDS KW - FHIR KW - SATUSEHAT KW - disaster KW - implementation KW - development KW - validation KW - emergency medical team KW - disaster management KW - Indonesia KW - Fast Healthcare Interoperability Resources KW - resources KW - interoperability KW - electronic medical records KW - EMR KW - reporting KW - disaster profile KW - health data KW - health data collection KW - World Health Organization KW - EMT KW - WHO KW - MDS KW - minimum dataset N2 - Background: The National Disaster Management Agency (Badan Nasional Penanggulangan Bencana) handles disaster management in Indonesia as a health cluster by collecting, storing, and reporting information on the state of survivors and their health from various sources during disasters. Data were collected on paper and transferred to Microsoft Excel spreadsheets. These activities are challenging because there are no standards for data collection. The World Health Organization (WHO) introduced a standard for health data collection during disasters for emergency medical teams (EMTs) in the form of a minimum dataset (MDS). Meanwhile, the Ministry of Health of Indonesia launched the SATUSEHAT platform to integrate all electronic medical records in Indonesia based on Fast Healthcare Interoperability Resources (FHIR). Objective: This study aims to implement the WHO EMT MDS to create a disaster profile for the SATUSEHAT platform using FHIR. Methods: We extracted variables from 2 EMT MDS medical records?the WHO and Association of Southeast Asian Nations (ASEAN) versions?and the daily reporting form. We then performed a mapping process to match these variables with the FHIR resources and analyzed the gaps between the variables and base resources. Next, we conducted profiling to see if there were any changes in the selected resources and created extensions to fill the gap using the Forge application. Subsequently, the profile was implemented using an open-source FHIR server. Results: The total numbers of variables extracted from the WHO EMT MDS, ASEAN EMT MDS, and daily reporting forms were 30, 32, and 46, with the percentage of variables matching FHIR resources being 100% (30/30), 97% (31/32), and 85% (39/46), respectively. From the 40 resources available in the FHIR ID core, we used 10, 14, and 9 for the WHO EMT MDS, ASEAN EMT MDS, and daily reporting form, respectively. Based on the gap analysis, we found 4 variables in the daily reporting form that were not covered by the resources. Thus, we created extensions to address this gap. Conclusions: We successfully created a disaster profile that can be used as a disaster case for the SATUSEHAT platform. This profile may standardize health data collection during disasters. UR - https://medinform.jmir.org/2024/1/e59651 UR - http://dx.doi.org/10.2196/59651 ID - info:doi/10.2196/59651 ER - TY - JOUR AU - Rosenau, Lorenz AU - Behrend, Paul AU - Wiedekopf, Joshua AU - Gruendner, Julian AU - Ingenerf, Josef PY - 2024/7/23 TI - Uncovering Harmonization Potential in Health Care Data Through Iterative Refinement of Fast Healthcare Interoperability Resources Profiles Based on Retrospective Discrepancy Analysis: Case Study JO - JMIR Med Inform SP - e57005 VL - 12 KW - Health Level 7 Fast Healthcare Interoperability Resources KW - HL7 FHIR KW - FHIR profiles KW - interoperability KW - data harmonization KW - discrepancy analysis KW - data quality KW - cross-institutional data exchange KW - Medical Informatics Initiative KW - federated data access challenges N2 - Background: Cross-institutional interoperability between health care providers remains a recurring challenge worldwide. The German Medical Informatics Initiative, a collaboration of 37 university hospitals in Germany, aims to enable interoperability between partner sites by defining Fast Healthcare Interoperability Resources (FHIR) profiles for the cross-institutional exchange of health care data, the Core Data Set (CDS). The current CDS and its extension modules define elements representing patients? health care records. All university hospitals in Germany have made significant progress in providing routine data in a standardized format based on the CDS. In addition, the central research platform for health, the German Portal for Medical Research Data feasibility tool, allows medical researchers to query the available CDS data items across many participating hospitals. Objective: In this study, we aimed to evaluate a novel approach of combining the current top-down generated FHIR profiles with the bottom-up generated knowledge gained by the analysis of respective instance data. This allowed us to derive options for iteratively refining FHIR profiles using the information obtained from a discrepancy analysis. Methods: We developed an FHIR validation pipeline and opted to derive more restrictive profiles from the original CDS profiles. This decision was driven by the need to align more closely with the specific assumptions and requirements of the central feasibility platform?s search ontology. While the original CDS profiles offer a generic framework adaptable for a broad spectrum of medical informatics use cases, they lack the specificity to model the nuanced criteria essential for medical researchers. A key example of this is the necessity to represent specific laboratory codings and values interdependencies accurately. The validation results allow us to identify discrepancies between the instance data at the clinical sites and the profiles specified by the feasibility platform and addressed in the future. Results: A total of 20 university hospitals participated in this study. Historical factors, lack of harmonization, a wide range of source systems, and case sensitivity of coding are some of the causes for the discrepancies identified. While in our case study, Conditions, Procedures, and Medications have a high degree of uniformity in the coding of instance data due to legislative requirements for billing in Germany, we found that laboratory values pose a significant data harmonization challenge due to their interdependency between coding and value. Conclusions: While the CDS achieves interoperability, different challenges for federated data access arise, requiring more specificity in the profiles to make assumptions on the instance data. We further argue that further harmonization of the instance data can significantly lower required retrospective harmonization efforts. We recognize that discrepancies cannot be resolved solely at the clinical site; therefore, our findings have a wide range of implications and will require action on multiple levels and by various stakeholders. UR - https://medinform.jmir.org/2024/1/e57005 UR - http://dx.doi.org/10.2196/57005 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/57005 ER - TY - JOUR AU - Aisyah, Nur Dewi AU - Setiawan, Heri Agus AU - Lokopessy, Fawwaz Alfiano AU - Faradiba, Nadia AU - Setiaji, Setiaji AU - Manikam, Logan AU - Kozlakidis, Zisis PY - 2024/7/18 TI - The Information and Communication Technology Maturity Assessment at Primary Health Care Services Across 9 Provinces in Indonesia: Evaluation Study JO - JMIR Med Inform SP - e55959 VL - 12 KW - public health centers KW - Puskesmas KW - digital maturity KW - infrastructure KW - primary health care KW - district health office KW - primary care clinics KW - Asia KW - Asian KW - Indonesia KW - ICT KW - information and communication technologies KW - information and communication technology KW - maturity KW - adoption KW - readiness KW - implementation KW - eHealth KW - telehealth KW - telemedicine KW - cross sectional KW - survey KW - surveys KW - questionnaire KW - questionnaires KW - primary care N2 - Background: Indonesia has rapidly embraced digital health, particularly during the COVID-19 pandemic, with over 15 million daily health application users. To advance its digital health vision, the government is prioritizing the development of health data and application systems into an integrated health care technology ecosystem. This initiative involves all levels of health care, from primary to tertiary, across all provinces. In particular, it aims to enhance primary health care services (as the main interface with the general population) and contribute to Indonesia?s digital health transformation. Objective: This study assesses the information and communication technology (ICT) maturity in Indonesian health care services to advance digital health initiatives. ICT maturity assessment tools, specifically designed for middle-income countries, were used to evaluate digital health capabilities in 9 provinces across 5 Indonesian islands. Methods: A cross-sectional survey was conducted from February to March 2022, in 9 provinces across Indonesia, representing the country?s diverse conditions on its major islands. Respondents included staff from public health centers (Puskesmas), primary care clinics (Klinik Pratama), and district health offices (Dinas Kesehatan Kabupaten/Kota). The survey used adapted ICT maturity assessment questionnaires, covering human resources, software and system, hardware, and infrastructure. It was administered electronically and involved 121 public health centers, 49 primary care clinics, and 67 IT staff from district health offices. Focus group discussions were held to delve deeper into the assessment results and gain more descriptive insights. Results: In this study, 237 participants represented 3 distinct categories: 121 public health centers, 67 district health offices, and 49 primary clinics. These instances were selected from a sample of 9 of the 34 provinces in Indonesia. Collected data from interviews and focus group discussions were transformed into scores on a scale of 1 to 5, with 1 indicating low ICT readiness and 5 indicating high ICT readiness. On average, the breakdown of ICT maturity scores was as follows: 2.71 for human resources? capability in ICT use and system management, 2.83 for software and information systems, 2.59 for hardware, and 2.84 for infrastructure, resulting in an overall average score of 2.74. According to the ICT maturity level pyramid, the ICT maturity of health care providers in Indonesia fell between the basic and good levels. The need to pursue best practices also emerged strongly. Further analysis of the ICT maturity scores, when examined by province, revealed regional variations. Conclusions: The maturity of ICT use is influenced by several critical components. Enhancing human resources, ensuring infrastructure, the availability of supportive hardware, and optimizing information systems are imperative to attain ICT maturity in health care services. In the context of ICT maturity assessment, significant score variations were observed across health care levels in the 9 provinces, underscoring the diversity in ICT readiness and the need for regionally customized follow-up actions. UR - https://medinform.jmir.org/2024/1/e55959 UR - http://dx.doi.org/10.2196/55959 ID - info:doi/10.2196/55959 ER - TY - JOUR AU - Lamer, Antoine AU - Saint-Dizier, Chloé AU - Paris, Nicolas AU - Chazard, Emmanuel PY - 2024/7/17 TI - Data Lake, Data Warehouse, Datamart, and Feature Store: Their Contributions to the Complete Data Reuse Pipeline JO - JMIR Med Inform SP - e54590 VL - 12 KW - data reuse KW - data lake KW - data warehouse KW - feature extraction KW - datamart KW - feature store UR - https://medinform.jmir.org/2024/1/e54590 UR - http://dx.doi.org/10.2196/54590 ID - info:doi/10.2196/54590 ER - TY - JOUR AU - Ji, Hyerim AU - Kim, Seok AU - Sunwoo, Leonard AU - Jang, Sowon AU - Lee, Ho-Young AU - Yoo, Sooyoung PY - 2024/7/12 TI - Integrating Clinical Data and Medical Imaging in Lung Cancer: Feasibility Study Using the Observational Medical Outcomes Partnership Common Data Model Extension JO - JMIR Med Inform SP - e59187 VL - 12 KW - DICOM KW - OMOP KW - CDM KW - lung cancer KW - medical imaging KW - data integration KW - data quality KW - Common Data Model KW - Digital Imaging and Communications in Medicine KW - Observational Medical Outcomes Partnership N2 - Background: Digital transformation, particularly the integration of medical imaging with clinical data, is vital in personalized medicine. The Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) standardizes health data. However, integrating medical imaging remains a challenge. Objective: This study proposes a method for combining medical imaging data with the OMOP CDM to improve multimodal research. Methods: Our approach included the analysis and selection of digital imaging and communications in medicine header tags, validation of data formats, and alignment according to the OMOP CDM framework. The Fast Healthcare Interoperability Resources ImagingStudy profile guided our consistency in column naming and definitions. Imaging Common Data Model (I-CDM), constructed using the entity-attribute-value model, facilitates scalable and efficient medical imaging data management. For patients with lung cancer diagnosed between 2010 and 2017, we introduced 4 new tables?IMAGING_STUDY, IMAGING_SERIES, IMAGING_ANNOTATION, and FILEPATH?to standardize various imaging-related data and link to clinical data. Results: This framework underscores the effectiveness of I-CDM in enhancing our understanding of lung cancer diagnostics and treatment strategies. The implementation of the I-CDM tables enabled the structured organization of a comprehensive data set, including 282,098 IMAGING_STUDY, 5,674,425 IMAGING_SERIES, and 48,536 IMAGING_ANNOTATION records, illustrating the extensive scope and depth of the approach. A scenario-based analysis using actual data from patients with lung cancer underscored the feasibility of our approach. A data quality check applying 44 specific rules confirmed the high integrity of the constructed data set, with all checks successfully passed, underscoring the reliability of our findings. Conclusions: These findings indicate that I-CDM can improve the integration and analysis of medical imaging and clinical data. By addressing the challenges in data standardization and management, our approach contributes toward enhancing diagnostics and treatment strategies. Future research should expand the application of I-CDM to diverse disease populations and explore its wide-ranging utility for medical conditions. UR - https://medinform.jmir.org/2024/1/e59187 UR - http://dx.doi.org/10.2196/59187 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/59187 ER - TY - JOUR AU - Salmi, Liz AU - Peereboom, Danielle AU - Dorr, A. David AU - Graham, R. Leilani AU - Wolff, L. Jennifer AU - DesRoches, M. Catherine PY - 2024/6/27 TI - Patient Portals Fail to Collect Structured Information About Who Else is Involved in a Person?s Care JO - J Med Internet Res SP - e49394 VL - 26 KW - patient portals KW - shared access KW - proxy access KW - portal delegates KW - caregivers KW - care partners KW - health IT KW - electronic health records UR - https://www.jmir.org/2024/1/e49394 UR - http://dx.doi.org/10.2196/49394 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/49394 ER - TY - JOUR AU - Palojoki, Sari AU - Lehtonen, Lasse AU - Vuokko, Riikka PY - 2024/4/25 TI - Semantic Interoperability of Electronic Health Records: Systematic Review of Alternative Approaches for Enhancing Patient Information Availability JO - JMIR Med Inform SP - e53535 VL - 12 KW - electronic health record KW - health records KW - EHR KW - EHRs KW - semantic KW - health care data KW - semantic interoperability KW - interoperability KW - standardize KW - standardized KW - standardization KW - cross-border data exchange KW - systematic review KW - synthesis KW - syntheses KW - review methods KW - review methodology KW - search KW - searches KW - searching KW - systematic KW - data exchange KW - information sharing KW - ontology KW - ontologies KW - terminology KW - terminologies KW - standard KW - standards KW - classification KW - PRISMA KW - data sharing KW - Preferred Reporting Items for Systematic Reviews and Meta-Analyses N2 - Background: Semantic interoperability facilitates the exchange of and access to health data that are being documented in electronic health records (EHRs) with various semantic features. The main goals of semantic interoperability development entail patient data availability and use in diverse EHRs without a loss of meaning. Internationally, current initiatives aim to enhance semantic development of EHR data and, consequently, the availability of patient data. Interoperability between health information systems is among the core goals of the European Health Data Space regulation proposal and the World Health Organization?s Global Strategy on Digital Health 2020-2025. Objective: To achieve integrated health data ecosystems, stakeholders need to overcome challenges of implementing semantic interoperability elements. To research the available scientific evidence on semantic interoperability development, we defined the following research questions: What are the key elements of and approaches for building semantic interoperability integrated in EHRs? What kinds of goals are driving the development? and What kinds of clinical benefits are perceived following this development? Methods: Our research questions focused on key aspects and approaches for semantic interoperability and on possible clinical and semantic benefits of these choices in the context of EHRs. Therefore, we performed a systematic literature review in PubMed by defining our study framework based on previous research. Results: Our analysis consisted of 14 studies where data models, ontologies, terminologies, classifications, and standards were applied for building interoperability. All articles reported clinical benefits of the selected approach to enhancing semantic interoperability. We identified 3 main categories: increasing the availability of data for clinicians (n=6, 43%), increasing the quality of care (n=4, 29%), and enhancing clinical data use and reuse for varied purposes (n=4, 29%). Regarding semantic development goals, data harmonization and developing semantic interoperability between different EHRs was the largest category (n=8, 57%). Enhancing health data quality through standardization (n=5, 36%) and developing EHR-integrated tools based on interoperable data (n=1, 7%) were the other identified categories. The results were closely coupled with the need to build usable and computable data out of heterogeneous medical information that is accessible through various EHRs and databases (eg, registers). Conclusions: When heading toward semantic harmonization of clinical data, more experiences and analyses are needed to assess how applicable the chosen solutions are for semantic interoperability of health care data. Instead of promoting a single approach, semantic interoperability should be assessed through several levels of semantic requirements A dual model or multimodel approach is possibly usable to address different semantic interoperability issues during development. The objectives of semantic interoperability are to be achieved in diffuse and disconnected clinical care environments. Therefore, approaches for enhancing clinical data availability should be well prepared, thought out, and justified to meet economically sustainable and long-term outcomes. UR - https://medinform.jmir.org/2024/1/e53535 UR - http://dx.doi.org/10.2196/53535 ID - info:doi/10.2196/53535 ER - TY - JOUR AU - Baek, Jinyoung AU - Lawson, Jonathan AU - Rahimzadeh, Vasiliki PY - 2024/3/20 TI - Investigating the Roles and Responsibilities of Institutional Signing Officials After Data Sharing Policy Reform for Federally Funded Research in the United States: National Survey JO - JMIR Form Res SP - e49822 VL - 8 KW - biomedical research KW - survey KW - surveys KW - data sharing KW - data management KW - secondary use KW - National Institutes of Health KW - signing official KW - information sharing KW - exchange KW - access KW - data science KW - accessibility KW - policy KW - policies N2 - Background: New federal policies along with rapid growth in data generation, storage, and analysis tools are together driving scientific data sharing in the United States. At the same, triangulating human research data from diverse sources can also create situations where data are used for future research in ways that individuals and communities may consider objectionable. Institutional gatekeepers, namely, signing officials (SOs), are therefore at the helm of compliant management and sharing of human data for research. Of those with data governance responsibilities, SOs most often serve as signatories for investigators who deposit, access, and share research data between institutions. Although SOs play important leadership roles in compliant data sharing, we know surprisingly little about their scope of work, roles, and oversight responsibilities. Objective: The purpose of this study was to describe existing institutional policies and practices of US SOs who manage human genomic data access, as well as how these may change in the wake of new Data Management and Sharing requirements for National Institutes of Health?funded research in the United States. Methods: We administered an anonymous survey to institutional SOs recruited from biomedical research institutions across the United States. Survey items probed where data generated from extramurally funded research are deposited, how researchers outside the institution access these data, and what happens to these data after extramural funding ends. Results: In total, 56 institutional SOs participated in the survey. We found that SOs frequently approve duplicate data deposits and impose stricter access controls when data use limitations are unclear or unspecified. In addition, 21% (n=12) of SOs knew where data from federally funded projects are deposited after project funding sunsets. As a consequence, most investigators deposit their scientific data into ?a National Institutes of Health?funded repository? to meet the Data Management and Sharing requirements but also within the ?institution?s own repository? or a third-party repository. Conclusions: Our findings inform 5 policy recommendations and best practices for US SOs to improve coordination and develop comprehensive and consistent data governance policies that balance the need for scientific progress with effective human data protections. UR - https://formative.jmir.org/2024/1/e49822 UR - http://dx.doi.org/10.2196/49822 UR - http://www.ncbi.nlm.nih.gov/pubmed/38506894 ID - info:doi/10.2196/49822 ER - TY - JOUR AU - Declerck, Jens AU - Kalra, Dipak AU - Vander Stichele, Robert AU - Coorevits, Pascal PY - 2024/3/6 TI - Frameworks, Dimensions, Definitions of Aspects, and Assessment Methods for the Appraisal of Quality of Health Data for Secondary Use: Comprehensive Overview of Reviews JO - JMIR Med Inform SP - e51560 VL - 12 KW - data quality KW - data quality dimensions KW - data quality assessment KW - secondary use KW - data quality framework KW - fit for purpose N2 - Background: Health care has not reached the full potential of the secondary use of health data because of?among other issues?concerns about the quality of the data being used. The shift toward digital health has led to an increase in the volume of health data. However, this increase in quantity has not been matched by a proportional improvement in the quality of health data. Objective: This review aims to offer a comprehensive overview of the existing frameworks for data quality dimensions and assessment methods for the secondary use of health data. In addition, it aims to consolidate the results into a unified framework. Methods: A review of reviews was conducted including reviews describing frameworks of data quality dimensions and their assessment methods, specifically from a secondary use perspective. Reviews were excluded if they were not related to the health care ecosystem, lacked relevant information related to our research objective, and were published in languages other than English. Results: A total of 22 reviews were included, comprising 22 frameworks, with 23 different terms for dimensions, and 62 definitions of dimensions. All dimensions were mapped toward the data quality framework of the European Institute for Innovation through Health Data. In total, 8 reviews mentioned 38 different assessment methods, pertaining to 31 definitions of the dimensions. Conclusions: The findings in this review revealed a lack of consensus in the literature regarding the terminology, definitions, and assessment methods for data quality dimensions. This creates ambiguity and difficulties in developing specific assessment methods. This study goes a step further by assigning all observed definitions to a consolidated framework of 9 data quality dimensions. UR - https://medinform.jmir.org/2024/1/e51560 UR - http://dx.doi.org/10.2196/51560 UR - http://www.ncbi.nlm.nih.gov/pubmed/38446534 ID - info:doi/10.2196/51560 ER - TY - JOUR AU - Amar, Fouzia AU - April, Alain AU - Abran, Alain PY - 2024/1/30 TI - Electronic Health Record and Semantic Issues Using Fast Healthcare Interoperability Resources: Systematic Mapping Review JO - J Med Internet Res SP - e45209 VL - 26 KW - electronic health record KW - EHR KW - Health Level Seven International Fast Healthcare Interoperability Resources KW - HL7 FHIR KW - interoperability, web ontology language KW - OWL KW - ontology KW - semantic KW - terminology KW - resource description framework KW - RDF KW - machine learning KW - ML KW - natural language processing KW - NLP N2 - Background: The increasing use of electronic health records and the Internet of Things has led to interoperability issues at different levels (structural and semantic). Standards are important not only for successfully exchanging data but also for appropriately interpreting them (semantic interoperability). Thus, to facilitate the semantic interoperability of data exchanged in health care, considerable resources have been deployed to improve the quality of shared clinical data by structuring and mapping them to the Fast Healthcare Interoperability Resources (FHIR) standard. Objective: The aims of this study are 2-fold: to inventory the studies on FHIR semantic interoperability resources and terminologies and to identify and classify the approaches and contributions proposed in these studies. Methods: A systematic mapping review (SMR) was conducted using 10 electronic databases as sources of information for inventory and review studies published during 2012 to 2022 on the development and improvement of semantic interoperability using the FHIR standard. Results: A total of 70 FHIR studies were selected and analyzed to identify FHIR resource types and terminologies from a semantic perspective. The proposed semantic approaches were classified into 6 categories, namely mapping (31/126, 24.6%), terminology services (18/126, 14.3%), resource description framework or web ontology language?based proposals (24/126, 19%), annotation proposals (18/126, 14.3%), machine learning (ML) and natural language processing (NLP) proposals (20/126, 15.9%), and ontology-based proposals (15/126, 11.9%). From 2012 to 2022, there has been continued research in 6 categories of approaches as well as in new and emerging annotations and ML and NLP proposals. This SMR also classifies the contributions of the selected studies into 5 categories: framework or architecture proposals, model proposals, technique proposals, comparison services, and tool proposals. The most frequent type of contribution is the proposal of a framework or architecture to enable semantic interoperability. Conclusions: This SMR provides a classification of the different solutions proposed to address semantic interoperability using FHIR at different levels: collecting, extracting and annotating data, modeling electronic health record data from legacy systems, and applying transformation and mapping to FHIR models and terminologies. The use of ML and NLP for unstructured data is promising and has been applied to specific use case scenarios. In addition, terminology services are needed to accelerate their use and adoption; furthermore, techniques and tools to automate annotation and ontology comparison should help reduce human interaction. UR - https://www.jmir.org/2024/1/e45209 UR - http://dx.doi.org/10.2196/45209 UR - http://www.ncbi.nlm.nih.gov/pubmed/38289660 ID - info:doi/10.2196/45209 ER - TY - JOUR AU - Guinez-Molinos, Sergio AU - Espinoza, Sonia AU - Andrade, Jose AU - Medina, Alejandro PY - 2024/1/29 TI - Design and Development of Learning Management System Huemul for Teaching Fast Healthcare Interoperability Resource: Algorithm Development and Validation Study JO - JMIR Med Educ SP - e45413 VL - 10 KW - interoperability KW - health information system KW - Health Level Seven International KW - HL7 KW - Fast Healthcare Interoperability Resource KW - FHIR KW - certification KW - training KW - interoperable KW - e-learning KW - application programming interface KW - API N2 - Background: Interoperability between health information systems is a fundamental requirement to guarantee the continuity of health care for the population. The Fast Healthcare Interoperability Resource (FHIR) is the standard that enables the design and development of interoperable systems with broad adoption worldwide. However, FHIR training curriculums need an easily administered web-based self-learning platform with modules to create scenarios and questions that the learner answers. This paper proposes a system for teaching FHIR that automatically evaluates the answers, providing the learner with continuous feedback and progress. Objective: We are designing and developing a learning management system for creating, applying, deploying, and automatically assessing FHIR web-based courses. Methods: The system requirements for teaching FHIR were collected through interviews with experts involved in academic and professional FHIR activities (universities and health institutions). The interviews were semistructured, recording and documenting each meeting. In addition, we used an ad hoc instrument to register and analyze all the needs to elicit the requirements. Finally, the information obtained was triangulated with the available evidence. This analysis was carried out with Atlas-ti software. For design purposes, the requirements were divided into functional and nonfunctional. The functional requirements were (1) a test and question manager, (2) an application programming interface (API) to orchestrate components, (3) a test evaluator that automatically evaluates the responses, and (4) a client application for students. Security and usability are essential nonfunctional requirements to design functional and secure interfaces. The software development methodology was based on the traditional spiral model. The end users of the proposed system are (1) the system administrator for all technical aspects of the server, (2) the teacher designing the courses, and (3) the students interested in learning FHIR. Results: The main result described in this work is Huemul, a learning management system for training on FHIR, which includes the following components: (1) Huemul Admin: a web application to create users, tests, and questions and define scores; (2) Huemul API: module for communication between different software components (FHIR server, client, and engine); (3) Huemul Engine: component for answers evaluation to identify differences and validate the content; and (4) Huemul Client: the web application for users to show the test and questions. Huemul was successfully implemented with 416 students associated with the 10 active courses on the platform. In addition, the teachers have created 60 tests and 695 questions. Overall, the 416 students who completed their courses rated Huemul highly. Conclusions: Huemul is the first platform that allows the creation of courses, tests, and questions that enable the automatic evaluation and feedback of FHIR operations. Huemul has been implemented in multiple FHIR teaching scenarios for health care professionals. Professionals trained on FHIR with Huemul are leading successful national and international initiatives. UR - https://mededu.jmir.org/2024/1/e45413 UR - http://dx.doi.org/10.2196/45413 UR - http://www.ncbi.nlm.nih.gov/pubmed/38285492 ID - info:doi/10.2196/45413 ER - TY - JOUR AU - Li, Shuning AU - Felix Gomez, Gomez Grace AU - Xu, Huiping AU - Rajapuri, Singh Anushri AU - Dixon, E. Brian AU - Thyvalikakath, Thankam PY - 2024/1/11 TI - Dentists? Information Needs and Opinions on Accessing Patient Information via Health Information Exchange: Survey Study JO - JMIR Form Res SP - e51200 VL - 8 KW - dentistry KW - medical history KW - integrated medical and dental records KW - health information exchange KW - medical record KW - dental record KW - dental KW - medical information KW - dental care KW - adverse drug effect KW - medication KW - allergies KW - cost KW - data safety KW - data accuracy N2 - Background: The integration of medical and dental records is gaining significance over the past 2 decades. However, few studies have evaluated the opinions of practicing dentists on patient medical histories. Questions remain on dentists? information needs; their perception of the reliability of patient-reported medical history; satisfaction with the available information and the methods to gather this information; and their attitudes to other options, such as a health information exchange (HIE) network, to collect patient medical history. Objective: This study aims to determine Indiana dentists? information needs regarding patients? medical information and their opinions about accessing it via an HIE. Methods: We administered a web-based survey to Indiana Dental Association members to assess their current medical information-retrieval approaches, the information critical for dental care, and their willingness to access or share information via an HIE. We used descriptive statistics to summarize survey results and multivariable regression to examine the associations between survey respondents? characteristics and responses. Results: Of the 161 respondents (161/2148, 7.5% response rate), 99.5% (n=160) respondents considered patients? medical histories essential to confirm no contraindications, including allergies or the need for antibiotic prophylaxis during dental care and other adverse drug events. The critical information required were medical conditions or diagnosis, current medications, and allergies, which were gathered from patient reports. Furthermore, 88.2% (n=142) of respondents considered patient-reported histories reliable; however, they experienced challenges obtaining information from patients and physicians. Additionally, 70.2% (n=113) of respondents, especially those who currently access an HIE or electronic health record, were willing to use an HIE to access or share their patient?s information, and 91.3% (n=147) shared varying interests in such a service. However, usability, data accuracy, data safety, and cost are the driving factors in adopting an HIE. Conclusions: Patients? medical histories are essential for dentists to optimize dental care, especially for those with chronic conditions. In addition, most dentists are interested in using an HIE to access patient medical histories. The findings from this study can provide an alternative option for improving communications between dental and medical professionals and help the health information technology system or tool developers identify critical requirements for more user-friendly designs. UR - https://formative.jmir.org/2024/1/e51200 UR - http://dx.doi.org/10.2196/51200 UR - http://www.ncbi.nlm.nih.gov/pubmed/38206667 ID - info:doi/10.2196/51200 ER - TY - JOUR AU - He, Xianying AU - Cui, Fangfang AU - Lyu, Minzhao AU - Sun, Dongxu AU - Zhang, Xu AU - Shi, Jinming AU - Zhang, Yinglan AU - Jiang, Shuai AU - Zhao, Jie PY - 2024/1/5 TI - Key Factors Influencing the Operationalization and Effectiveness of Telemedicine Services in Henan Province, China: Cross-Sectional Analysis JO - J Med Internet Res SP - e45020 VL - 26 KW - telemedicine KW - service statistics KW - efficiency KW - quality management N2 - Background: Telemedicine has demonstrated its potential in alleviating the unbalanced distribution of medical resources across different regions. Henan, a province in China with a population of approximately 100 million, is especially affected by a health care divide. The province has taken a proactive step by establishing a regional collaborative platform for telemedicine services provided by top-tier provincial hospitals. Objective: We aim to identify the key factors that influence the current operationalization and effectiveness of telemedicine services in Henan province. The insights gained from this study will serve as valuable references for enhancing the efficient operation of telemedicine platforms in low- and middle-income regions. Methods: We analyzed service reports from the performance management system of telemedicine services in Henan province throughout 2020. Using descriptive statistics and graphical methods, we examined key influencing factors, such as management competency; device configuration; and hospital capability, capacity, and service efficacy, across hospitals at 2 different tiers. In addition, we used generalized linear models and multiple linear regression models to identify key operational factors that significantly affect the service volume and efficacy of 2 major telemedicine services, namely teleconsultation and tele-education. Results: Among the 89 tier 3 hospitals and 97 tier 2 hospitals connected to the collaborative telemedicine platform, 65 (73%) and 55 (57%), respectively, have established standardized management procedures for telemedicine services. As the primary delivery method for telemedicine services, 90% (80/89) of the tier 3 hospitals and 94% (91/97) of the tier 2 hospitals host videoconferencing consultations through professional hardware terminals rather than generic computers. Teleconsultation is the dominant service type, with an average annual service volume per institution of 173 (IQR 37-372) and 60 (IQR 14-271) teleconsultations for tier 3 and tier 2 hospitals, respectively. Key factors influencing the service volume at each hospital include available funding, management competency, the number of connected upper tiers, and the number of professional staff. After receiving teleconsultations from tier 3 (65/89, 73%) and tier 2 (61/97, 63%) hospitals, patients reported significant improvements in their medical conditions. In addition, we observed that service efficacy is positively influenced by management competency, financial incentives, the number of connected upper or lower tiers, and the involvement of participating medical professionals. Conclusions: Telemedicine has become increasingly popular in Henan province, with a notable focus on teleconsultation and tele-education services. Despite its popularity, many medical institutions, especially tier 2 hospitals, face challenges related to management competency. In addition to enhancing the effectiveness of existing telemedicine services, health care decision-makers in Henan province and other low- and middle-income regions should consider expanding the service categories, such as including remote emergency care and telesurgery, which have promise in addressing crucial health care needs in these regions. UR - https://www.jmir.org/2024/1/e45020 UR - http://dx.doi.org/10.2196/45020 UR - http://www.ncbi.nlm.nih.gov/pubmed/38180795 ID - info:doi/10.2196/45020 ER - TY - JOUR AU - Renner, Christopher AU - Reimer, Niklas AU - Christoph, Jan AU - Busch, Hauke AU - Metzger, Patrick AU - Boerries, Melanie AU - Ustjanzew, Arsenij AU - Boehm, Dominik AU - Unberath, Philipp PY - 2023/12/11 TI - Extending cBioPortal for Therapy Recommendation Documentation in Molecular Tumor Boards: Development and Usability Study JO - JMIR Med Inform SP - e50017 VL - 11 KW - molecular tumor board KW - documentation platform KW - usability evaluation KW - cBioPortal KW - precision medicine KW - genomics KW - health information interoperability KW - tumor KW - implementation KW - cancer KW - tool KW - platform KW - development KW - precision KW - use KW - user-centered N2 - Background: In molecular tumor boards (MTBs), patients with rare or advanced cancers are discussed by a multidisciplinary team of health care professionals. Software support for MTBs is lacking; in particular, tools for preparing and documenting MTB therapy recommendations need to be developed. Objective: We aimed to implement an extension to cBioPortal to provide a tool for the documentation of therapy recommendations from MTB sessions in a secure and standardized manner. The developed extension should be embedded in the patient view of cBioPortal to enable easy documentation during MTB sessions. The resulting architecture for storing therapy recommendations should be integrable into various hospital information systems. Methods: On the basis of a requirements analysis and technology analysis for authentication techniques, a prototype was developed and iteratively refined through a user-centered development process. In conclusion, the tool was evaluated via a usability evaluation, including interviews, structured questionnaires, and the System Usability Scale. Results: The patient view of cBioPortal was extended with a new tab that enables users to document MTB sessions and therapy recommendations. The role-based access control was expanded to allow for a finer distinction among the rights to view, edit, and delete data. The usability evaluation showed overall good usability and a System Usability Scale score of 83.57. Conclusions: This study demonstrates how cBioPortal can be extended to not only visualize MTB patient data but also be used as a documentation platform for therapy recommendations. UR - https://medinform.jmir.org/2023/1/e50017 UR - http://dx.doi.org/10.2196/50017 UR - http://www.ncbi.nlm.nih.gov/pubmed/38079196 ID - info:doi/10.2196/50017 ER - TY - JOUR AU - Tully, M. Laura AU - Nye, E. Kathleen AU - Ereshefsky, Sabrina AU - Tryon, L. Valerie AU - Hakusui, Komei Christopher AU - Savill, Mark AU - Niendam, A. Tara PY - 2023/11/14 TI - Incorporating Community Partner Perspectives on eHealth Technology Data Sharing Practices for the California Early Psychosis Intervention Network: Qualitative Focus Group Study With a User-Centered Design Approach JO - JMIR Hum Factors SP - e44194 VL - 10 KW - attitude KW - content analysis KW - data sharing KW - eHealth KW - ethic KW - focus group KW - health information exchange KW - mental health KW - perspective KW - preference KW - psychosis KW - psychotic KW - qualitative data N2 - Background: Increased use of eHealth technology and user data to drive early identification and intervention algorithms in early psychosis (EP) necessitates the implementation of ethical data use practices to increase user acceptability and trust. Objective: First, the study explored EP community partner perspectives on data sharing best practices, including beliefs, attitudes, and preferences for ethical data sharing and how best to present end-user license agreements (EULAs). Second, we present a test case of adopting a user-centered design approach to develop a EULA protocol consistent with community partner perspectives and priorities. Methods: We conducted an exploratory, qualitative, and focus group?based study exploring mental health data sharing and privacy preferences among individuals involved in delivering or receiving EP care within the California Early Psychosis Intervention Network. Key themes were identified through a content analysis of focus group transcripts. Additionally, we conducted workshops using a user-centered design approach to develop a EULA that addresses participant priorities. Results: In total, 24 participants took part in the study (14 EP providers, 6 clients, and 4 family members). Participants reported being receptive to data sharing despite being acutely aware of widespread third-party sharing across digital domains, the risk of breaches, and motives hidden in the legal language of EULAs. Consequently, they reported feeling a loss of control and a lack of protection over their data. Participants indicated these concerns could be mitigated through user-level control for data sharing with third parties and an understandable, transparent EULA, including multiple presentation modalities, text at no more than an eighth-grade reading level, and a clear definition of key terms. These findings were successfully integrated into the development of a EULA and data opt-in process that resulted in 88.1% (421/478) of clients who reviewed the video agreeing to share data. Conclusions: Many of the factors considered pertinent to informing data sharing practices in a mental health setting are consistent among clients, family members, and providers delivering or receiving EP care. These community partners? priorities can be successfully incorporated into developing EULA practices that can lead to high voluntary data sharing rates. UR - https://humanfactors.jmir.org/2023/1/e44194 UR - http://dx.doi.org/10.2196/44194 UR - http://www.ncbi.nlm.nih.gov/pubmed/37962921 ID - info:doi/10.2196/44194 ER - TY - JOUR AU - Pirmani, Ashkan AU - De Brouwer, Edward AU - Geys, Lotte AU - Parciak, Tina AU - Moreau, Yves AU - Peeters, M. Liesbet PY - 2023/11/9 TI - The Journey of Data Within a Global Data Sharing Initiative: A Federated 3-Layer Data Analysis Pipeline to Scale Up Multiple Sclerosis Research JO - JMIR Med Inform SP - e48030 VL - 11 KW - data analysis pipeline KW - federated model sharing KW - real-world data KW - evidence-based decision-making KW - end-to-end pipeline KW - multiple sclerosis KW - data analysis KW - pipeline KW - data science KW - federated KW - neurology KW - brain KW - spine KW - spinal nervous system KW - neuroscience KW - data sharing KW - rare KW - low prevalence N2 - Background: Investigating low-prevalence diseases such as multiple sclerosis is challenging because of the rather small number of individuals affected by this disease and the scattering of real-world data across numerous data sources. These obstacles impair data integration, standardization, and analysis, which negatively impact the generation of significant meaningful clinical evidence. Objective: This study aims to present a comprehensive, research question?agnostic, multistakeholder-driven end-to-end data analysis pipeline that accommodates 3 prevalent data-sharing streams: individual data sharing, core data set sharing, and federated model sharing. Methods: A demand-driven methodology is employed for standardization, followed by 3 streams of data acquisition, a data quality enhancement process, a data integration procedure, and a concluding analysis stage to fulfill real-world data-sharing requirements. This pipeline?s effectiveness was demonstrated through its successful implementation in the COVID-19 and multiple sclerosis global data sharing initiative. Results: The global data sharing initiative yielded multiple scientific publications and provided extensive worldwide guidance for the community with multiple sclerosis. The pipeline facilitated gathering pertinent data from various sources, accommodating distinct sharing streams and assimilating them into a unified data set for subsequent statistical analysis or secure data examination. This pipeline contributed to the assembly of the largest data set of people with multiple sclerosis infected with COVID-19. Conclusions: The proposed data analysis pipeline exemplifies the potential of global stakeholder collaboration and underlines the significance of evidence-based decision-making. It serves as a paradigm for how data sharing initiatives can propel advancements in health care, emphasizing its adaptability and capacity to address diverse research inquiries. UR - https://medinform.jmir.org/2023/1/e48030 UR - http://dx.doi.org/10.2196/48030 UR - http://www.ncbi.nlm.nih.gov/pubmed/37943585 ID - info:doi/10.2196/48030 ER - TY - JOUR AU - Saha, Amit AU - Andrewartha, Kelly AU - Badman, G. Steven AU - Tangey, Annie AU - Smith, S. Kirsty AU - Sandler, Sergio AU - Ramsay, Stuart AU - Braund, Wilton AU - Manoj-Margison, Stuart AU - Matthews, Susan AU - Shephard, S. Mark D. AU - Guy, Rebecca AU - Causer, Louise PY - 2023/9/1 TI - Flexible and Innovative Connectivity Solution to Support National Decentralized Infectious Diseases Point-of-Care Testing Programs in Primary Health Services: Descriptive Evaluation Study JO - J Med Internet Res SP - e46701 VL - 25 KW - infectious disease KW - diagnostics KW - POC testing KW - point-of-care KW - connectivity KW - digital health KW - disease surveillance KW - GeneXpert N2 - Background: Molecular point-of-care (POC) testing for Chlamydia trachomatis (CT), Neisseria gonorrhoeae (NG), and Trichomonas vaginalis (TV) has been available in regional and remote primary health services in Australia as part of a decentralized POC testing program since 2016 and for SARS-CoV-2 from 2020. As there was no suitable existing connectivity infrastructure to capture and deliver POC test results to a range of end users, a new system needed to be established. Objective: The aim of the study is to design, implement, and optimize a connectivity system to meet clinical management, analytical quality management, and public health surveillance needs. Methods: We used commercially available e-messaging technology coupled with adapted proprietary software to integrate a decentralized molecular POC testing platform (GeneXpert) in primary health services and interface with end-user databases. This connectivity infrastructure was designed to overcome key barriers to the implementation, integration, and monitoring of these large multijurisdictional infectious disease POC testing networks. Test result messages were tailored to meet end-user needs. Using centrally captured deidentified data, we evaluated the time to receipt of test results and completeness of accompanying demographic data. Results: From January 2016 to April 2020, we operationalized the system at 31 health services across 4 jurisdictions and integrated with 5 different patient management systems to support the real-time delivery of 29,356 CT/NG and TV test results to designated recipients (patient management system and local clinical and central program databases). In 2019, 12,105 CT/NG and TV results were delivered, and the median time to receipt of results was 3.2 (IQR 2.2-4.6) hours, inclusive of test runtime. From May 2020 to August 2022, we optimized the system to support rapid scale-up of SARS-CoV-2 testing (105 services; 6 jurisdictions; 71,823 tests) and additional sexually transmissible infection testing (16,232 tests), including the electronic disease-specific notifications to jurisdictional health departments and alerts for connectivity disruption and positive results. In 2022, 19,355 results were delivered with an overall median transmission time of 2.3 (IQR 1.4-3.1) hours, 2.2 (IQR 1.2-2.3) hours for SARS-CoV-2 (n=16,066), 3.0 (IQR 2.0-4.0) hours for CT/NG (n=1843), and 2.6 (IQR 1.5-3.8) hours for TV (n=1446). Demographic data (age, sex, and ethnicity) were completed for 99.5% of test results in 2022. Conclusions: This innovative connectivity system designed to meet end-user needs has proven to be sustainable, flexible, and scalable. It represents the first such system in Australia established independent of traditional pathology providers to support POC testing in geographically dispersed remote primary health services. The system has been optimized to deliver real-time test results and has proven critical for clinical, public health, and quality management. The system has significantly supported equitable access to rapid diagnostics for infectious diseases across Australia, and its design is suitable for onboarding other POC tests and testing platforms in the future. UR - https://www.jmir.org/2023/1/e46701 UR - http://dx.doi.org/10.2196/46701 UR - http://www.ncbi.nlm.nih.gov/pubmed/37656506 ID - info:doi/10.2196/46701 ER - TY - JOUR AU - Busch-Casler, Julia AU - Radic, Marija PY - 2023/8/30 TI - Trust and Health Information Exchanges: Qualitative Analysis of the Intent to Share Personal Health Information JO - J Med Internet Res SP - e41635 VL - 25 KW - trust KW - eHealth KW - data sharing KW - sharing personal health information KW - privacy KW - security KW - health information exchange KW - consent KW - data exchange KW - belief-attitude-intention KW - behavior formation N2 - Background: Digital health has the potential to improve the quality of care, reduce health care costs, and increase patient satisfaction. Patient acceptance and consent are a prerequisite for effective sharing of personal health information (PHI) through health information exchanges (HIEs). Patients need to form and retain trust in the system(s) they use to leverage the full potential of digital health. Germany is at the forefront of approving digital treatment options with cost coverage through statutory health insurance. However, the German population has a high level of technology skepticism and a low level of trust, providing a good basis to illuminate various facets of eHealth trust formation. Objective: In a German setting, we aimed to answer the question, How does an individual form a behavioral intent to share PHI with an HIE platform? We discussed trust and informed consent through (1) synthesizing the main influence factor models into a complex model of trust in HIE, (2) providing initial validation of influence factors based on a qualitative study with patient interviews, and (3) developing a model of trust formation for digital health apps. Methods: We developed a complex model of the formation of trust and the intent to share PHI. We provided initial validation of the influence factors through 20 qualitative, semistructured interviews in the German health care setting and used a deductive coding approach to analyze the data. Results: We found that German patients show a positive intent to share their PHI with HIEs under certain conditions. These include (perceived) information security and a noncommercial organization as the recipient of the PHI. Technology experience, age, policy and regulation, and a disposition to trust play an important role in an individual?s privacy concern, which, combined with social influence, affects trust formation on a cognitive and emotional level. We found a high level of cognitive trust in health care and noncommercial research institutions but distrust in commercial entities. We further found that in-person interactions with physicians increase trust in digital health apps and PHI sharing. Patients? emotional trust depends on disposition and social influences. To form their intent to share, patients undergo a privacy calculus. Hereby, the individual?s benefit (eg, convenience), benefits for the individual?s own health, and the benefits for public welfare often outweigh the perceived risks of sharing PHI. Conclusions: With the higher demand for timely PHI, HIE providers will need to clearly communicate the benefits of their solutions and their information security measures to health care providers (physicians, nursing and administrative staff) and patients and include them as key partners to increase trust. Offering easy access and educational measures as well as the option for specific consent may increase patients? trust and their intention to share PHI. UR - https://www.jmir.org/2023/1/e41635 UR - http://dx.doi.org/10.2196/41635 UR - http://www.ncbi.nlm.nih.gov/pubmed/37647102 ID - info:doi/10.2196/41635 ER - TY - JOUR AU - Nan, Jingwen AU - Xu, Li-Qun PY - 2023/8/21 TI - Designing Interoperable Health Care Services Based on Fast Healthcare Interoperability Resources: Literature Review JO - JMIR Med Inform SP - e44842 VL - 11 KW - Health level 7 Fast Healthcare Interoperability Resources KW - HL7 FHIR KW - interoperability KW - literature review KW - practice guideline KW - mobile phone N2 - Background: With the advent of the digital economy and the aging population, the demand for diversified health care services and innovative care delivery models has been overwhelming. This trend has accelerated the urgency to implement effective and efficient data exchange and service interoperability, which underpins coordinated care services among tiered health care institutions, improves the quality of oversight of regulators, and provides vast and comprehensive data collection to support clinical medicine and health economics research, thus improving the overall service quality and patient satisfaction. To meet this demand and facilitate the interoperability of IT systems of stakeholders, after years of preparation, Health Level 7 formally introduced, in 2014, the Fast Healthcare Interoperability Resources (FHIR) standard. It has since continued to evolve. FHIR depends on the Implementation Guide (IG) to ensure feasibility and consistency while developing an interoperable health care service. The IG defines rules with associated documentation on how FHIR resources are used to tackle a particular problem. However, a gap remains between IGs and the process of building actual services because IGs are rules without specifying concrete methods, procedures, or tools. Thus, stakeholders may feel it nontrivial to participate in the ecosystem, giving rise to the need for a more actionable practice guideline (PG) for promoting FHIR?s fast adoption. Objective: This study aimed to propose a general FHIR PG to facilitate stakeholders in the health care ecosystem to understand FHIR and quickly develop interoperable health care services. Methods: We selected a collection of FHIR-related papers about the latest studies or use cases on designing and building FHIR-based interoperable health care services and tagged each use case as belonging to 1 of the 3 dominant innovation feature groups that are also associated with practice stages, that is, data standardization, data management, and data integration. Next, we reviewed each group?s detailed process and key techniques to build respective care services and collate a complete FHIR PG. Finally, as an example, we arbitrarily selected a use case outside the scope of the reviewed papers and mapped it back to the FHIR PG to demonstrate the effectiveness and generalizability of the PG. Results: The FHIR PG includes 2 core elements: one is a practice design that defines the responsibilities of stakeholders and outlines the complete procedure from data to services, and the other is a development architecture for practice design, which lists the available tools for each practice step and provides direct and actionable recommendations. Conclusions: The FHIR PG can bridge the gap between IGs and the process of building actual services by proposing actionable methods, procedures, and tools. It assists stakeholders in identifying participants? roles, managing the scope of responsibilities, and developing relevant modules, thus helping promote FHIR-based interoperable health care services. UR - https://medinform.jmir.org/2023/1/e44842 UR - http://dx.doi.org/10.2196/44842 UR - http://www.ncbi.nlm.nih.gov/pubmed/37603388 ID - info:doi/10.2196/44842 ER - TY - JOUR AU - Mueller, Christian AU - Herrmann, Patrick AU - Cichos, Stephan AU - Remes, Bernhard AU - Junker, Erwin AU - Hastenteufel, Tobias AU - Mundhenke, Markus PY - 2023/8/4 TI - Automated Electronic Health Record to Electronic Data Capture Transfer in Clinical Studies in the German Health Care System: Feasibility Study and Gap Analysis JO - J Med Internet Res SP - e47958 VL - 25 KW - digital transformation KW - automated data transfer KW - electronic medical record KW - electronic data capture KW - EDC KW - data transfer KW - electronic health record KW - EHR KW - digital transfer KW - barrier KW - clinical practice KW - EHR2EDC KW - health care system N2 - Background: Data transfer between electronic health records (EHRs) at the point of care and electronic data capture (EDC) systems for clinical research is still mainly carried out manually, which is error-prone as well as cost- and time-intensive. Automated digital transfer from EHRs to EDC systems (EHR2EDC) would enable more accurate and efficient data capture but has so far encountered technological barriers primarily related to data format and the technological environment: in Germany, health care data are collected at the point of care in a variety of often individualized practice management systems (PMSs), most of them not interoperable. Data quality for research purposes within EDC systems must meet the requirements of regulatory authorities for standardized submission of clinical trial data and safety reports. Objective: We aimed to develop a model for automated data transfer as part of an observational study that allows data of sufficient quality to be captured at the point of care, extracted from various PMSs, and automatically transferred to electronic case report forms in EDC systems. This required addressing aspects of data security, as well as the lack of compatibility between EHR health care data and the data quality required in EDC systems for clinical research. Methods: The SaniQ software platform (Qurasoft GmbH) is already used to extract and harmonize predefined variables from electronic medical records of different Compu Group Medical?hosted PMSs. From there, data are automatically transferred to the validated AlcedisTRIAL EDC system (Alcedis GmbH) for data collection and management. EHR2EDC synchronization occurs automatically overnight, and real-time updates can be initiated manually following each data entry in the EHR. The electronic case report form (eCRF) contains 13 forms with 274 variables. Of these, 5 forms with 185 variables contain 67 automatically transferable variables (67/274, 24% of all variables and 67/185, 36% of eligible variables). Results: This model for automated data transfer bridges the current gap between clinical practice data capture at the point of care and the data sets required by regulatory agencies; it also enables automated EHR2EDC data transfer in compliance with the General Data Protection Regulation (GDPR). It addresses feasibility, connectivity, and system compatibility of currently used PMSs in health care and clinical research and is therefore directly applicable. Conclusions: This use case demonstrates that secure, consistent, and automated end-to-end data transmission from the treating physician to the regulatory authority is feasible. Automated data transmission can be expected to reduce effort and save resources and costs while ensuring high data quality. This may facilitate the conduct of studies for both study sites and sponsors, thereby accelerating the development of new drugs. Nevertheless, the industry-wide implementation of EHR2EDC requires policy decisions that set the framework for the use of research data based on routine PMS data. UR - https://www.jmir.org/2023/1/e47958 UR - http://dx.doi.org/10.2196/47958 UR - http://www.ncbi.nlm.nih.gov/pubmed/37540555 ID - info:doi/10.2196/47958 ER - TY - JOUR AU - Shi, Jingjin AU - Yuan, Rui AU - Yan, Xueming AU - Wang, Miao AU - Qiu, Jun AU - Ji, Xinhua AU - Yu, Guangjun PY - 2023/7/6 TI - Factors Influencing the Sharing of Personal Health Data Based on the Integrated Theory of Privacy Calculus and Theory of Planned Behaviors Framework: Results of a Cross-Sectional Study of Chinese Patients in the Yangtze River Delta JO - J Med Internet Res SP - e46562 VL - 25 KW - personal health data KW - data sharing KW - influencing factor KW - privacy calculus KW - Theory of Planned Behavior N2 - Background: The health care system in China is fragmented, and the distribution of high-quality resources remains uneven and irrational. Information sharing is essential to the development of an integrated health care system and maximizing its benefits. Nevertheless, data sharing raises concerns regarding the privacy and confidentiality of personal health information, which affect the willingness of patients to share information. Objective: This study aims to investigate patients? willingness to share personal health data at different levels of maternal and child specialized hospitals in China, to propose and test a conceptual model to identify key influencing factors, and to provide countermeasures and suggestions to improve the level of data sharing. Methods: A research framework based on the Theory of Privacy Calculus and the Theory of Planned Behavior was developed and empirically tested through a cross-sectional field survey from September 2022 to October 2022 in the Yangtze River Delta region, China. A 33-item measurement instrument was developed. Descriptive statistics, chi-square tests, and logistic regression analyses were conducted to characterize the willingness of sharing personal health data and differences by sociodemographic factors. Structural equation modeling was used to assess the reliability and validity of the measurement as well as to test the research hypotheses. The STROBE (Strengthening the Reporting of Observational Studies in Epidemiology) checklist for cross-sectional studies was applied for reporting results. Results: The empirical framework had a good fit with the chi-square/degree of freedom (?2/df)=2.637, root-mean-square residual=0.032, root-mean-square error of approximation=0.048, goodness-of-fit index=0.950, and normed fit index=0.955. A total of 2060 completed questionnaires were received (response rate: 2060/2400, 85.83%). Moral motive (?=.803, P<.001), perceived benefit (?=.123, P=.04), and perceived effectiveness of government regulation (?=.110, P=.001) had a significantly positive association with sharing willingness, while perceived risk (?=?.143, P<.001) had a significant negative impact, with moral motive having the greatest impact. The estimated model explained 90.5% of the variance in sharing willingness. Conclusions: This study contributes to the literature on personal health data sharing by integrating the Theory of Privacy Calculus and the Theory of Planned Behavior. Most Chinese patients are willing to share their personal health data, which is primarily motivated by moral concerns to improve public health and assist in the diagnosis and treatment of illnesses. Patients with no prior experience with personal information disclosure and those who have tertiary hospital visits were more likely to share their health data. Practical guidelines are provided to health policy makers and health care practitioners to encourage patients to share their personal health information. UR - https://www.jmir.org/2023/1/e46562 UR - http://dx.doi.org/10.2196/46562 UR - http://www.ncbi.nlm.nih.gov/pubmed/37410526 ID - info:doi/10.2196/46562 ER - TY - JOUR AU - Esmaeilzadeh, Pouyan PY - 2023/4/12 TI - Evolution of Health Information Sharing Between Health Care Organizations: Potential of Nonfungible Tokens JO - Interact J Med Res SP - e42685 VL - 12 KW - health information exchange KW - HIE KW - personal health information KW - PHI KW - blockchain KW - nonfungible token KW - NFT KW - evolution of technology UR - https://www.i-jmr.org/2023/1/e42685 UR - http://dx.doi.org/10.2196/42685 UR - http://www.ncbi.nlm.nih.gov/pubmed/37043269 ID - info:doi/10.2196/42685 ER - TY - JOUR AU - Rho, Jung Mi AU - Park, Jihwan PY - 2023/4/12 TI - An Investigation of Factors Influencing the Postponement of the Use of Distributed Research Networks in South Korea: Web-Based Users? Survey Study JO - JMIR Form Res SP - e40660 VL - 7 KW - distributed research networks KW - postponement KW - performance risk KW - workload N2 - Background: Distributed research networks (DRNs) offer researchers the advantage of using various big data sets that are difficult to access and use. In addition, since the data are not physically exposed to the outside, it is possible to conduct research using medical data safely without data exposure. However, researchers still have difficulties and are concerned about using DRNs. Few studies involving DRNs have been conducted from the user?s viewpoint. Therefore, it is necessary to look at DRNs from the researcher?s point of view and find ways to facilitate the active use of DRNs. Objective: This study aimed to identify the factors that made researchers hesitate to use DRNs and to derive a method to facilitate active DRN use. Methods: We conducted a web-based survey of people working in the medical fields, such as hospitals and universities. We used 131 respondents? data from a survey from December 6 to 17, 2021. We conducted multiple regression analyses to determine the factors affecting the postponement of using DRNs. In addition, 2 independent sample t tests were conducted to analyze the difference between the 2 groups according to the following factors: organization, gender, experience with DRNs, length of the research career, position, and age. Results: Performance risk (t5=2.725, P=.007) and workload from DRNs (t5=3.543, P=.001) were significantly associated with users? postponement of DRN use. Researchers working at hospitals were found to feel more burdened by DRN use than researchers working at universities (t129=1.975, P=.05). It was also found that women perceived a higher privacy risk of DRNs than men (t129=?2.303, P=.02) and that those who had experience using DRNs delayed their use less than those without experience (t129=?4.215, P<.001). Conclusions: It is necessary to simplify the research and approval processes to reduce the performance risk and workload of research using DRNs. To optimize the process, DRN providers should develop a way to improve users? experiences. More user-friendly functionalities should be developed from the researcher's point of view. It is necessary to continuously promote effective functionalities for DRNs to reduce concerns about privacy risks. This study identified the concerns of DRN users in terms of DRN use and suggested ways to actively use DRNs. The derived results can be reflected in planning and developing DRNs. Our research will be helpful to prepare an activation plan for DRNs. UR - https://formative.jmir.org/2023/1/e40660 UR - http://dx.doi.org/10.2196/40660 UR - http://www.ncbi.nlm.nih.gov/pubmed/37043286 ID - info:doi/10.2196/40660 ER - TY - JOUR AU - Shah, Rathin Rohin AU - Bailey, Peter Joseph PY - 2023/4/6 TI - Asymmetric Interoperability as a Strategy Among Provider Group Health Information Exchange: Directional Analysis JO - J Med Internet Res SP - e43127 VL - 25 KW - health information exchange KW - quality payment program KW - electronic health records KW - electronic referrals KW - medical informatics KW - technology adoption KW - health information interoperability N2 - Background: High levels of seamless, bidirectional health information exchange continue to be broadly limited among provider groups despite the vast array of benefits that interoperability entails for patient care and the many persistent efforts across the health care ecosystem directed at advancing interoperability. As provider groups seek to act in their strategic best interests, they are often interoperable and exchange information in certain directions but not others, leading to the formation of asymmetries. Objective: We aimed to examine the correlation at the provider group level between the distinct directions of interoperability with regard to sending health information and receiving health information, to describe how this correlation varies across provider group types and provider group sizes, and to analyze the symmetries and asymmetries that arise in the exchange of patient health information across the health care ecosystem as a result. Methods: We used data from the Centers for Medicare & Medicaid Services (CMS), which included interoperability performance information for 2033 provider groups within the Quality Payment Program Merit-based Incentive Payment System and maintained distinct performance measures for sending health information and receiving health information. In addition to compiling descriptive statistics, we also conducted a cluster analysis to identify differences among provider groups?particularly with respect to symmetric versus asymmetric interoperability. Results: We found that the examined directions of interoperability?sending health information and receiving health information?have relatively low bivariate correlation (0.4147) with a significant number of observations exhibiting asymmetric interoperability (42.5%). Primary care providers are generally more likely to exchange information asymmetrically than specialty providers, being more inclined to receive health information than to send health information. Finally, we found that larger provider groups are significantly less likely to be bidirectionally interoperable than smaller groups, although both are asymmetrically interoperable at similar rates. Conclusions: The adoption of interoperability by provider groups is more nuanced than traditionally considered and should not be seen as a binary determination (ie, to be interoperable or not). Asymmetric interoperability?and its pervasive presence among provider groups?reiterates how the manner in which provider groups exchange patient health information is a strategic choice and may pose similar implications and potential harms as the practice of information blocking has in the past. Differences in the operational paradigms among provider groups of varying types and sizes may explain their varying extents of health information exchange for sending and receiving health information. There continues to remain substantial room for improvement on the path to achieving a fully interoperable health care ecosystem, and future policy efforts directed at advancing interoperability should consider the practice of being asymmetrically interoperable among provider groups. UR - https://www.jmir.org/2023/1/e43127 UR - http://dx.doi.org/10.2196/43127 UR - http://www.ncbi.nlm.nih.gov/pubmed/37023418 ID - info:doi/10.2196/43127 ER - TY - JOUR AU - Tolley, Clare AU - Seymour, Helen AU - Watson, Neil AU - Nazar, Hamde AU - Heed, Jude AU - Belshaw, Dave PY - 2023/3/10 TI - Barriers and Opportunities for the Use of Digital Tools in Medicines Optimization Across the Interfaces of Care: Stakeholder Interviews in the United Kingdom JO - JMIR Med Inform SP - e42458 VL - 11 KW - health information exchange KW - patient safety KW - medicines optimization KW - transfer of care KW - health informatics KW - qualitative N2 - Background: People with long-term conditions frequently transition between care settings that require information about a patient?s medicines to be transferred or translated between systems. This process is currently error prone and associated with unintentional changes to medications and miscommunication, which can lead to serious patient consequences. One study estimated that approximately 250,000 serious medication errors occur in England when a patient transitions from hospital to home. Digital tools can equip health care professionals with the right information at the right time and place to support practice. Objective: This study aimed to answer the following questions: what systems are being used to transfer information across interfaces of care within a region of England? and what are the challenges and potential opportunities for more effective cross-sector working to support medicines optimization? Methods: A team of researchers at Newcastle University conducted a qualitative study by performing in-depth semistructured interviews with 23 key stakeholders in medicines optimization and IT between January and March 2022. The interviews lasted for approximately 1 hour. The interviews and field notes were transcribed and analyzed using the framework approach. The themes were discussed, refined, and applied systematically to the data set. Member checking was also performed. Results: This study revealed themes and subthemes pertaining to 3 key areas: transfer of care issues, challenges of digital tools, and future hopes and opportunities. We identified a major complexity in terms of the number of different medicine management systems used throughout the region. There were also important challenges owing to incomplete patient records. We also highlighted the barriers related to using multiple systems and their subsequent impact on user workflow, a lack of interoperability between systems, gaps in the availability of digital data, and poor IT and change management. Finally, participants described their hopes and opportunities for the future provision of medicines optimization services, and there was a clear need for a patient-centered consolidated integrated health record for use by all health and care professionals across different sectors, bridging those working in primary, secondary, and social care. Conclusions: The effectiveness and utility of shared records depend on the data within; therefore, health care and digital leaders must support and strongly encourage the adoption of established and approved digital information standards. Specific priorities regarding understanding of the vision for pharmacy services and supporting this with appropriate funding arrangements and strategic planning of the workforce were also described. In addition, the following were identified as key enablers to harness the benefits of digital tools to support future medicines optimization: development of minimal system requirements; enhanced IT system management to reduce unnecessary repetition; and importantly, meaningful and continued collaboration with clinical and IT stakeholders to optimize systems and share good practices across care sectors. UR - https://medinform.jmir.org/2023/1/e42458 UR - http://dx.doi.org/10.2196/42458 UR - http://www.ncbi.nlm.nih.gov/pubmed/36897631 ID - info:doi/10.2196/42458 ER - TY - JOUR AU - Turbow, Sara AU - Vaughan, P. Camille AU - Culler, D. Steven AU - Hepburn, W. Kenneth AU - Rask, J. Kimberly AU - Perkins, M. Molly AU - Clevenger, K. Carolyn AU - Ali, K. Mohammed PY - 2023/3/10 TI - The Impact of Health Information Exchange on In-Hospital and Postdischarge Mortality in Older Adults with Alzheimer Disease Readmitted to a Different Hospital Within 30 Days of Discharge: Cohort Study of Medicare Beneficiaries JO - JMIR Aging SP - e41936 VL - 6 KW - readmissions KW - care fragmentation KW - health information exchange KW - mortality KW - Alzheimer disease KW - electronic health information KW - information sharing KW - older adults KW - information exchange KW - hospital system KW - health informatics N2 - Background: Although electronic health information sharing is expanding nationally, it is unclear whether electronic health information sharing improves patient outcomes, particularly for patients who are at the highest risk of communication challenges, such as older adults with Alzheimer disease. Objective: To determine the association between hospital-level health information exchange (HIE) participation and in-hospital or postdischarge mortality among Medicare beneficiaries with Alzheimer disease or 30-day readmissions to a different hospital following an admission for one of several common conditions. Methods: This was a cohort study of Medicare beneficiaries with Alzheimer disease who had one or more 30-day readmissions in 2018 following an initial admission for select Hospital Readmission Reduction Program conditions (acute myocardial infarction, congestive heart failure, chronic obstructive pulmonary disease, and pneumonia) or common reasons for hospitalization among older adults with Alzheimer disease (dehydration, syncope, urinary tract infection, or behavioral issues). Using unadjusted and adjusted logistic regression, we examined the association between electronic information sharing and in-hospital mortality during the readmission or mortality in the 30 days following the readmission. Results: A total of 28,946 admission-readmission pairs were included. Beneficiaries with same-hospital readmissions were older (aged 81.1, SD 8.6 years) than beneficiaries with readmissions to different hospitals (age range 79.8-80.3 years, P<.001). Compared to admissions and readmissions to the same hospital, beneficiaries who had a readmission to a different hospital that shared an HIE with the admission hospital had 39% lower odds of dying during the readmission (adjusted odds ratio [AOR] 0.61, 95% CI 0.39-0.95). There were no differences in in-hospital mortality observed for admission-readmission pairs to different hospitals that participated in different HIEs (AOR 1.02, 95% CI 0.82-1.28) or to different hospitals where one or both hospitals did not participate in HIE (AOR 1.25, 95% CI 0.93-1.68), and there was no association between information sharing and postdischarge mortality. Conclusions: These results indicate that information sharing between unrelated hospitals via a shared HIE may be associated with lower in-hospital, but not postdischarge, mortality for older adults with Alzheimer disease. In-hospital mortality during a readmission to a different hospital was higher if the admission and readmission hospitals participated in different HIEs or if one or both hospitals did not participate in an HIE. Limitations of this analysis include that HIE participation was measured at the hospital level, rather than at the provider level. This study provides some evidence that HIEs can improve care for vulnerable populations receiving acute care from different hospitals. UR - https://aging.jmir.org/2023/1/e41936 UR - http://dx.doi.org/10.2196/41936 UR - http://www.ncbi.nlm.nih.gov/pubmed/36897638 ID - info:doi/10.2196/41936 ER - TY - JOUR AU - Sinaci, Anil A. AU - Gencturk, Mert AU - Teoman, Alper Huseyin AU - Laleci Erturkmen, Banu Gokce AU - Alvarez-Romero, Celia AU - Martinez-Garcia, Alicia AU - Poblador-Plou, Beatriz AU - Carmona-Pírez, Jonás AU - Löbe, Matthias AU - Parra-Calderon, Luis Carlos PY - 2023/3/8 TI - A Data Transformation Methodology to Create Findable, Accessible, Interoperable, and Reusable Health Data: Software Design, Development, and Evaluation Study JO - J Med Internet Res SP - e42822 VL - 25 KW - Health Level 7 Fast Healthcare Interoperability Resources KW - HL7 FHIR KW - Findable, Accessible, Interoperable, and Reusable principles KW - FAIR principles KW - health data sharing KW - health data transformation KW - secondary use N2 - Background: Sharing health data is challenging because of several technical, ethical, and regulatory issues. The Findable, Accessible, Interoperable, and Reusable (FAIR) guiding principles have been conceptualized to enable data interoperability. Many studies provide implementation guidelines, assessment metrics, and software to achieve FAIR-compliant data, especially for health data sets. Health Level 7 (HL7) Fast Healthcare Interoperability Resources (FHIR) is a health data content modeling and exchange standard. Objective: Our goal was to devise a new methodology to extract, transform, and load existing health data sets into HL7 FHIR repositories in line with FAIR principles, develop a Data Curation Tool to implement the methodology, and evaluate it on health data sets from 2 different but complementary institutions. We aimed to increase the level of compliance with FAIR principles of existing health data sets through standardization and facilitate health data sharing by eliminating the associated technical barriers. Methods: Our approach automatically processes the capabilities of a given FHIR end point and directs the user while configuring mappings according to the rules enforced by FHIR profile definitions. Code system mappings can be configured for terminology translations through automatic use of FHIR resources. The validity of the created FHIR resources can be automatically checked, and the software does not allow invalid resources to be persisted. At each stage of our data transformation methodology, we used particular FHIR-based techniques so that the resulting data set could be evaluated as FAIR. We performed a data-centric evaluation of our methodology on health data sets from 2 different institutions. Results: Through an intuitive graphical user interface, users are prompted to configure the mappings into FHIR resource types with respect to the restrictions of selected profiles. Once the mappings are developed, our approach can syntactically and semantically transform existing health data sets into HL7 FHIR without loss of data utility according to our privacy-concerned criteria. In addition to the mapped resource types, behind the scenes, we create additional FHIR resources to satisfy several FAIR criteria. According to the data maturity indicators and evaluation methods of the FAIR Data Maturity Model, we achieved the maximum level (level 5) for being Findable, Accessible, and Interoperable and level 3 for being Reusable. Conclusions: We developed and extensively evaluated our data transformation approach to unlock the value of existing health data residing in disparate data silos to make them available for sharing according to the FAIR principles. We showed that our method can successfully transform existing health data sets into HL7 FHIR without loss of data utility, and the result is FAIR in terms of the FAIR Data Maturity Model. We support institutional migration to HL7 FHIR, which not only leads to FAIR data sharing but also eases the integration with different research networks. UR - https://www.jmir.org/2023/1/e42822 UR - http://dx.doi.org/10.2196/42822 UR - http://www.ncbi.nlm.nih.gov/pubmed/36884270 ID - info:doi/10.2196/42822 ER - TY - JOUR AU - Walker, M. Daniel AU - Tarver, L. Willi AU - Jonnalagadda, Pallavi AU - Ranbom, Lorin AU - Ford, W. Eric AU - Rahurkar, Saurabh PY - 2023/2/24 TI - Perspectives on Challenges and Opportunities for Interoperability: Findings From Key Informant Interviews With Stakeholders in Ohio JO - JMIR Med Inform SP - e43848 VL - 11 KW - interoperability KW - health information exchange KW - health information technology KW - electronic health record KW - usability N2 - Background: Interoperability?the exchange and integration of data across the health care system?remains a challenge despite ongoing policy efforts aimed at promoting interoperability. Objective: This study aimed to identify current challenges and opportunities to advancing interoperability across stakeholders. Methods: Primary data were collected through qualitative, semistructured interviews with stakeholders (n=24) in Ohio from July to October 2021. Interviewees were sampled using a stratified purposive sample of key informants from 4 representative groups as follows: acute care and children?s hospital leaders, primary care providers, behavioral health providers, and regional health information exchange networks. Interviews focused on key informant perspectives on electronic health record implementation, the alignment of public policy with organizational strategy, interoperability implementation challenges, and opportunities for health information technology. The interviews were transcribed verbatim followed by rigorous qualitative analysis using directed content analysis. Results: The findings illuminate themes related to challenges and opportunities for interoperability that align with technological (ie, implementation challenges, mismatches in interoperability capabilities across stakeholders, and opportunities to leverage new technology and integrate social determinants of health data), organizational (ie, facilitators of interoperability and strategic alignment of participation in value-based payment programs with interoperability), and environmental (ie, policy) domains. Conclusions: Interoperability, although technically feasible for most providers, remains challenging for technological, organizational, and environmental reasons. Our findings suggest that the incorporation of end user considerations into health information technology development, implementation, policy, and standard deployment may support interoperability advancement. UR - https://medinform.jmir.org/2023/1/e43848 UR - http://dx.doi.org/10.2196/43848 UR - http://www.ncbi.nlm.nih.gov/pubmed/36826979 ID - info:doi/10.2196/43848 ER - TY - JOUR AU - Gottumukkala, Madhu PY - 2023/2/17 TI - Design, Development, and Evaluation of an Automated Solution for Electronic Information Exchange Between Acute and Long-term Postacute Care Facilities: Design Science Research JO - JMIR Form Res SP - e43758 VL - 7 KW - information exchange KW - interoperability KW - care transition KW - health information technology KW - health information exchange KW - open standards KW - long-term and postacute care KW - LTPAC KW - design science research N2 - Background: Information exchange is essential for transitioning high-quality care between care settings. Inadequate or delayed information exchange can result in medication errors, missed test results, considerable delays in care, and even readmissions. Unfortunately, long-term and postacute care facilities often lag behind other health care facilities in adopting health information technologies, increasing difficulty in facilitating care transitions through electronic information exchange. The research gap is most evident when considering the implications of the inability to electronically transfer patients? health records between these facilities. Objective: This study aimed to design and evaluate an open standards?based interoperability solution that facilitates seamless bidirectional information exchange between acute care and long-term and postacute care facilities using 2 vendor electronic health record (EHR) systems. Methods: Using the design science research methodology, we designed an interoperability solution that improves the bidirectional information exchange between acute care and long-term care (LTC) facilities using different EHR systems. Different approaches were applied in the study with a focus on the relevance cycle, including eliciting detailed requirements from stakeholders in the health system who understand the complex data formats, constraints, and workflows associated with transferring patient records between 2 different EHR systems. We performed literature reviews and sought experts in the health care industry from different organizations with a focus on the rigor cycle to identify the components relevant to the interoperability solution. The design cycle focused on iterating between the core activities of implementing and evaluating the proposed artifact. The artifact was evaluated at a health care organization with a combined footprint of acute and postacute care operations using 2 different EHR systems. Results: The resulting interoperability solution offered integrations with source systems and was proven to facilitate bidirectional information exchange for patients transferring between an acute care facility using an Epic EHR system and an LTC facility using a PointClickCare EHR system. This solution serves as a proof of concept for bidirectional data exchange between Epic and PointClickCare for medications, yet the solution is designed to expand to additional data elements such as allergies, problem lists, and diagnoses. Conclusions: Historically, the interoperability topic has centered on hospital-to-hospital data exchange, making it more challenging to evaluate the efficacy of data exchange between other care settings. In acute and LTC settings, there are differences in patients? needs and delivery of care workflows that are distinctly unique. In addition, the health care system?s components that offer long-term and acute care in the United States have evolved independently and separately. This study demonstrates that the interoperability solution improves the information exchange between acute and LTC facilities by simplifying data transfer, eliminating manual processes, and reducing data discrepancies using a design science research methodology. UR - https://formative.jmir.org/2023/1/e43758 UR - http://dx.doi.org/10.2196/43758 UR - http://www.ncbi.nlm.nih.gov/pubmed/36800213 ID - info:doi/10.2196/43758 ER - TY - JOUR AU - Raj, Minakshi AU - Ryan, Kerry AU - Amara, Sahr Philip AU - Nong, Paige AU - Calhoun, Karen AU - Trinidad, Grace M. AU - Thiel, Daniel AU - Spector-Bagdady, Kayte AU - De Vries, Raymond AU - Kardia, Sharon AU - Platt, Jodyn PY - 2023/1/31 TI - Policy Preferences Regarding Health Data Sharing Among Patients With Cancer: Public Deliberations JO - JMIR Cancer SP - e39631 VL - 9 KW - public deliberation KW - data sharing KW - precision health KW - health information exchange N2 - Background: Precision health offers the promise of advancing clinical care in data-driven, evidence-based, and personalized ways. However, complex data sharing infrastructures, for-profit (commercial) and nonprofit partnerships, and systems for data governance have been created with little attention to the values, expectations, and preferences of patients about how they want to be engaged in the sharing and use of their health information. We solicited patient opinions about institutional policy options using public deliberation methods to address this gap. Objective: We aimed to understand the policy preferences of current and former patients with cancer regarding the sharing of health information collected in the contexts of health information exchange and commercial partnerships and to identify the values invoked and perceived risks and benefits of health data sharing considered by the participants when formulating their policy preferences. Methods: We conducted 2 public deliberations, including predeliberation and postdeliberation surveys, with patients who had a current or former cancer diagnosis (n=61). Following informational presentations, the participants engaged in facilitated small-group deliberations to discuss and rank policy preferences related to health information sharing, such as the use of a patient portal, email or SMS text messaging, signage in health care settings, opting out of commercial data sharing, payment, and preservation of the status quo. The participants ranked their policy preferences individually, as small groups by mutual agreement, and then again individually in the postdeliberation survey. Results: After deliberation, the patient portal was ranked as the most preferred policy choice. The participants ranked no change in status quo as the least preferred policy option by a wide margin. Throughout the study, the participants expressed concerns about transparency and awareness, convenience, and accessibility of information about health data sharing. Concerns about the status quo centered around a lack of transparency, awareness, and control. Specifically, the patients were not aware of how, when, or why their data were being used and wanted more transparency in these regards as well as greater control and autonomy around the use of their health data. The deliberations suggested that patient portals would be a good place to provide additional information about data sharing practices but that over time, notifications should be tailored to patient preferences. Conclusions: Our study suggests the need for increased disclosure of health information sharing practices. Describing health data sharing practices through patient portals or other mechanisms personalized to patient preferences would minimize the concerns expressed by patients about the extent of data sharing that occurs without their knowledge. Future research and policies should identify ways to increase patient control over health data sharing without reducing the societal benefits of data sharing. UR - https://cancer.jmir.org/2023/1/e39631 UR - http://dx.doi.org/10.2196/39631 UR - http://www.ncbi.nlm.nih.gov/pubmed/36719719 ID - info:doi/10.2196/39631 ER - TY - JOUR AU - Mandel, C. Joshua AU - Pollak, P. J. AU - Mandl, D. Kenneth PY - 2022/11/4 TI - The Patient Role in a Federal National-Scale Health Information Exchange JO - J Med Internet Res SP - e41750 VL - 24 IS - 11 KW - health information exchange KW - patient control KW - Health Insurance Portability and Accountability Act KW - HIPAA KW - patient record KW - information exchange KW - information sharing KW - health record KW - privacy KW - security KW - public health KW - health policy KW - health information KW - federal trusted exchange KW - insurance company KW - patient data UR - https://www.jmir.org/2022/11/e41750 UR - http://dx.doi.org/10.2196/41750 UR - http://www.ncbi.nlm.nih.gov/pubmed/36331535 ID - info:doi/10.2196/41750 ER - TY - JOUR AU - Raj, Minakshi AU - Ryan, Kerry AU - Nong, Paige AU - Calhoun, Karen AU - Trinidad, Grace M. AU - De Vries, Raymond AU - Creary, Melissa AU - Spector-Bagdady, Kayte AU - Kardia, R. Sharon L. AU - Platt, Jodyn PY - 2022/9/16 TI - Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study JO - JMIR Cancer SP - e37793 VL - 8 IS - 3 KW - public deliberation KW - data sharing KW - health information exchange KW - patient engagement KW - health information KW - sharing KW - cancer KW - oncology KW - precision oncology KW - information KW - policy KW - personalized medicine KW - public preference N2 - Background: Precision oncology is one of the fastest-developing domains of personalized medicine and is one of many data-intensive fields. Policy for health information sharing that is informed by patient perspectives can help organizations align practice with patient preferences and expectations, but many patients are largely unaware of the complexities of how and why clinical health information is shared. Objective: This paper evaluates the process of public deliberation as an approach to understanding the values and preferences of current and former patients with cancer regarding the use and sharing of health information collected in the context of precision oncology. Methods: We conducted public deliberations with patients who had a current or former cancer diagnosis. A total of 61 participants attended 1 of 2 deliberative sessions (session 1, n=28; session 2, n=33). Study team experts led two educational plenary sessions, and trained study team members then facilitated discussions with small groups of participants. Participants completed pre- and postdeliberation surveys measuring knowledge, attitudes, and beliefs about precision oncology and data sharing. Following informational sessions, participants discussed, ranked, and deliberated two policy-related scenarios in small groups and in a plenary session. In the analysis, we evaluate our process of developing the deliberative sessions, the knowledge gained by participants during the process, and the extent to which participants reasoned with complex information to identify policy preferences. Results: The deliberation process was rated highly by participants. Participants felt they were listened to by their group facilitator, that their opinions were respected by their group, and that the process that led to the group?s decision was fair. Participants demonstrated improved knowledge of health data sharing policies between pre- and postdeliberation surveys, especially regarding the roles of physicians and health departments in health information sharing. Qualitative analysis of reasoning revealed that participants recognized complexity, made compromises, and engaged with trade-offs, considering both individual and societal perspectives related to health data sharing. Conclusions: The deliberative approach can be valuable for soliciting the input of informed patients on complex issues such as health information sharing policy. Participants in our two public deliberations demonstrated that giving patients information about a complex topic like health data sharing and the opportunity to reason with others and discuss the information can help garner important insights into policy preferences and concerns. Data on public preferences, along with the rationale for information sharing, can help inform policy-making processes. Increasing transparency and patient engagement is critical to ensuring that data-driven health care respects patient autonomy and honors patient values and expectations. UR - https://cancer.jmir.org/2022/3/e37793 UR - http://dx.doi.org/10.2196/37793 UR - http://www.ncbi.nlm.nih.gov/pubmed/36112409 ID - info:doi/10.2196/37793 ER - TY - JOUR AU - Muller, A. Sam H. AU - van Thiel, W. Ghislaine J. M. AU - Vrana, Marilena AU - Mostert, Menno AU - van Delden, M. Johannes J. PY - 2022/9/7 TI - Patients? and Publics? Preferences for Data-Intensive Health Research Governance: Survey Study JO - JMIR Hum Factors SP - e36797 VL - 9 IS - 3 KW - data-intensive health research KW - big data KW - data sharing KW - patient and public preferences KW - health data sharing conditions KW - ethics KW - governance KW - policy KW - patient and public involvement KW - research participants KW - trust N2 - Background: Patients and publics are generally positive about data-intensive health research. However, conditions need to be fulfilled for their support. Ensuring confidentiality, security, and privacy of patients? health data is pivotal. Patients and publics have concerns about secondary use of data by commercial parties and the risk of data misuse, reasons for which they favor personal control of their data. Yet, the potential of public benefit highlights the potential of building trust to attenuate these perceptions of harm and risk. Nevertheless, empirical evidence on how conditions for support of data-intensive health research can be operationalized to that end remains scant. Objective: This study aims to inform efforts to design governance frameworks for data-intensive health research, by gaining insight into the preferences of patients and publics for governance policies and measures. Methods: We distributed a digital questionnaire among a purposive sample of patients and publics. Data were analyzed using descriptive statistics and nonparametric inferential statistics to compare group differences and explore associations between policy preferences. Results: Study participants (N=987) strongly favored sharing their health data for scientific health research. Personal decision-making about which research projects health data are shared with (346/980, 35.3%), which researchers/organizations can have access (380/978, 38.9%), and the provision of information (458/981, 46.7%) were found highly important. Health data?sharing policies strengthening direct personal control, like being able to decide under which conditions health data are shared (538/969, 55.5%), were found highly important. Policies strengthening collective governance, like reliability checks (805/967, 83.2%) and security safeguards (787/976, 80.6%), were also found highly important. Further analysis revealed that participants willing to share health data, to a lesser extent, demanded policies strengthening direct personal control than participants who were reluctant to share health data. This was the case for the option to have health data deleted at any time (P<.001) and the ability to decide the conditions under which health data can be shared (P<.001). Overall, policies and measures enforcing conditions for support at the collective level of governance, like having an independent committee to evaluate requests for access to health data (P=.02), were most strongly favored. This also applied to participants who explicitly stressed that it was important to be able to decide the conditions under which health data can be shared, for instance, whether sanctions on data misuse are in place (P=.03). Conclusions: This study revealed that both a positive attitude toward health data sharing and demand for personal decision-making abilities were associated with policies and measures strengthening control at the collective level of governance. We recommend pursuing the development of this type of governance policy. More importantly, further study is required to understand how governance policies and measures can contribute to the trustworthiness of data-intensive health research. UR - https://humanfactors.jmir.org/2022/3/e36797 UR - http://dx.doi.org/10.2196/36797 UR - http://www.ncbi.nlm.nih.gov/pubmed/36069794 ID - info:doi/10.2196/36797 ER - TY - JOUR AU - Karim, A. Mohammad AU - Kum, Hye-Chung AU - Schmit, D. Cason PY - 2022/9/6 TI - A Study of Publicly Available Resources Addressing Legal Data-Sharing Barriers: Systematic Assessment JO - J Med Internet Res SP - e39333 VL - 24 IS - 9 KW - privacy KW - confidentiality KW - public health informatics KW - data sharing N2 - Background: United States data protection laws vary depending on the data type and its context. Data projects involving social determinants of health often concern different data protection laws, making them difficult to navigate. Objective: We systematically aggregated and assessed useful online resources to help navigate the data-sharing landscape. Methods: We included publicly available resources that discussed legal data-sharing issues with some health relevance and published between 2010 and 2019. We conducted an iterative search with a common string pattern using a general-purpose search engine that targeted 24 different sectors identified by Data Across Sectors for Health. We scored each online resource for its depth of legal and data-sharing discussions and value for addressing legal barriers. Results: Out of 3710 total search hits, 2721 unique URLs were reviewed for scope, 322 received full-text review, and 154 were selected for final coding. Legal agreements, consent, and agency guidance were the most widely covered legal topics, with HIPAA (The Health Insurance Portability and Accountability Act), Family Educational Rights and Privacy Act (FERPA), Title 42 of the Code of Federal Regulations Part 2 being the top 3 federal laws discussed. Clinical health care was the most prominent sector with a mention in 73 resources. Conclusions: This is the first systematic study of publicly available resources on legal data-sharing issues. We found existing gaps where resources covering certain laws or applications may be needed. The volume of resources we found is an indicator that real and perceived legal issues are a substantial barrier to efforts in leveraging data from different sectors to promote health. UR - https://www.jmir.org/2022/9/e39333 UR - http://dx.doi.org/10.2196/39333 UR - http://www.ncbi.nlm.nih.gov/pubmed/36066929 ID - info:doi/10.2196/39333 ER - TY - JOUR AU - Krzyzanowski, Brittany AU - Manson, M. Steven PY - 2022/8/3 TI - Twenty Years of the Health Insurance Portability and Accountability Act Safe Harbor Provision: Unsolved Challenges and Ways Forward JO - JMIR Med Inform SP - e37756 VL - 10 IS - 8 KW - Health Insurance Portability and Accountability Act KW - HIPAA KW - data privacy KW - health KW - maps KW - safe harbor KW - visualization KW - patient privacy UR - https://medinform.jmir.org/2022/8/e37756 UR - http://dx.doi.org/10.2196/37756 UR - http://www.ncbi.nlm.nih.gov/pubmed/35921140 ID - info:doi/10.2196/37756 ER - TY - JOUR AU - Vorisek, Nina Carina AU - Lehne, Moritz AU - Klopfenstein, Ines Sophie Anne AU - Mayer, Josephine Paula AU - Bartschke, Alexander AU - Haese, Thomas AU - Thun, Sylvia PY - 2022/7/19 TI - Fast Healthcare Interoperability Resources (FHIR) for Interoperability in Health Research: Systematic Review JO - JMIR Med Inform SP - e35724 VL - 10 IS - 7 KW - Fast Healthcare Interoperability Resources KW - FHIR KW - interoperability KW - health research KW - health care KW - health information technology KW - research KW - clinical research KW - public health KW - epidemiology N2 - Background: The standard Fast Healthcare Interoperability Resources (FHIR) is widely used in health information technology. However, its use as a standard for health research is still less prevalent. To use existing data sources more efficiently for health research, data interoperability becomes increasingly important. FHIR provides solutions by offering resource domains such as ?Public Health & Research? and ?Evidence-Based Medicine? while using already established web technologies. Therefore, FHIR could help standardize data across different data sources and improve interoperability in health research. Objective: The aim of our study was to provide a systematic review of existing literature and determine the current state of FHIR implementations in health research and possible future directions. Methods: We searched the PubMed/MEDLINE, Embase, Web of Science, IEEE Xplore, and Cochrane Library databases for studies published from 2011 to 2022. Studies investigating the use of FHIR in health research were included. Articles published before 2011, abstracts, reviews, editorials, and expert opinions were excluded. We followed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines and registered this study with PROSPERO (CRD42021235393). Data synthesis was done in tables and figures. Results: We identified a total of 998 studies, of which 49 studies were eligible for inclusion. Of the 49 studies, most (73%, n=36) covered the domain of clinical research, whereas the remaining studies focused on public health or epidemiology (6%, n=3) or did not specify their research domain (20%, n=10). Studies used FHIR for data capture (29%, n=14), standardization of data (41%, n=20), analysis (12%, n=6), recruitment (14%, n=7), and consent management (4%, n=2). Most (55%, 27/49) of the studies had a generic approach, and 55% (12/22) of the studies focusing on specific medical specialties (infectious disease, genomics, oncology, environmental health, imaging, and pulmonary hypertension) reported their solutions to be conferrable to other use cases. Most (63%, 31/49) of the studies reported using additional data models or terminologies: Systematized Nomenclature of Medicine Clinical Terms (29%, n=14), Logical Observation Identifiers Names and Codes (37%, n=18), International Classification of Diseases 10th Revision (18%, n=9), Observational Medical Outcomes Partnership common data model (12%, n=6), and others (43%, n=21). Only 4 (8%) studies used a FHIR resource from the domain ?Public Health & Research.? Limitations using FHIR included the possible change in the content of FHIR resources, safety, legal matters, and the need for a FHIR server. Conclusions: Our review found that FHIR can be implemented in health research, and the areas of application are broad and generalizable in most use cases. The implementation of international terminologies was common, and other standards such as the Observational Medical Outcomes Partnership common data model could be used as a complement to FHIR. Limitations such as the change of FHIR content, lack of FHIR implementation, safety, and legal matters need to be addressed in future releases to expand the use of FHIR and, therefore, interoperability in health research. UR - https://medinform.jmir.org/2022/7/e35724 UR - http://dx.doi.org/10.2196/35724 UR - http://www.ncbi.nlm.nih.gov/pubmed/35852842 ID - info:doi/10.2196/35724 ER - TY - JOUR AU - Chukwu, Emeka AU - Garg, Lalit AU - Obande-Ogbuinya, Nkiruka AU - Chattu, Kumar Vijay PY - 2022/7/7 TI - Standardizing Primary Health Care Referral Data Sets in Nigeria: Practitioners' Survey, Form Reviews, and Profiling of Fast Healthcare Interoperability Resources (FHIR) JO - JMIR Form Res SP - e28510 VL - 6 IS - 7 KW - FHIR KW - COVID-19 KW - digital health KW - eHealth KW - mHealth KW - BlockMom KW - Nigeria KW - primary health care KW - health information KW - health information exchange KW - interoperability N2 - Background: Referral linkages are crucial for efficient functioning of primary health care (PHC) systems. Fast Healthcare Interoperability Resource (FHIR) is an open global standard that facilitates structuring of health information for coordinated exchange among stakeholders. Objective: The objective of this study is to design FHIR profiles and present methodology and the profiled FHIR resource for Maternal and Child Health referral use cases in Ebonyi state, Nigeria?a typical low- and middle-income country (LMIC) setting. Methods: Practicing doctors, midwives, and nurses were purposefully sampled and surveyed. Different referral forms were reviewed. The union of data sets from surveys and forms was aggregated and mapped to base patient FHIR resource elements, and extensions were created for data sets not in the core FHIR specification. This study also introduced FHIR and its relation to the World Health Organization?s (WHO?s) International Classification of Diseases. Results: We found many different data elements from the referral forms and survey responses even in urban settings. The resulting FHIR standard profile is published on GitHub for adaptation or adoption as necessary to aid alignment with WHO recommendations. Understanding data sets used in health care and clinical practice for information sharing is crucial in properly standardizing information sharing, particularly during the management of COVID-19 and other infectious diseases. Development organizations and governments can use this methodology and profile to fast-track FHIR standards adoption for paper and electronic information sharing at PHC systems in LMICs. Conclusions: We presented our methodology for profiling the referral resource crucial for the standardized exchange of new and expectant moms? information. Using data from frontline providers and mapping to the FHIR profile helped contextualize the standardized profile. UR - https://formative.jmir.org/2022/7/e28510 UR - http://dx.doi.org/10.2196/28510 UR - http://www.ncbi.nlm.nih.gov/pubmed/35797096 ID - info:doi/10.2196/28510 ER - TY - JOUR AU - Rosenau, Lorenz AU - Majeed, W. Raphael AU - Ingenerf, Josef AU - Kiel, Alexander AU - Kroll, Björn AU - Köhler, Thomas AU - Prokosch, Hans-Ulrich AU - Gruendner, Julian PY - 2022/4/27 TI - Generation of a Fast Healthcare Interoperability Resources (FHIR)-based Ontology for Federated Feasibility Queries in the Context of COVID-19: Feasibility Study JO - JMIR Med Inform SP - e35789 VL - 10 IS - 4 KW - federated queries KW - feasibility study KW - Fast Healthcare Interoperability Resource KW - FHIR Search KW - CQL KW - ontology KW - terminology server KW - query KW - feasibility KW - FHIR KW - terminology KW - development KW - COVID-19 KW - automation KW - user interface KW - map KW - input KW - hospital KW - data KW - Germany KW - accessibility KW - harmonized N2 - Background: The COVID-19 pandemic highlighted the importance of making research data from all German hospitals available to scientists to respond to current and future pandemics promptly. The heterogeneous data originating from proprietary systems at hospitals' sites must be harmonized and accessible. The German Corona Consensus Dataset (GECCO) specifies how data for COVID-19 patients will be standardized in Fast Healthcare Interoperability Resources (FHIR) profiles across German hospitals. However, given the complexity of the FHIR standard, the data harmonization is not sufficient to make the data accessible. A simplified visual representation is needed to reduce the technical burden, while allowing feasibility queries. Objective: This study investigates how a search ontology can be automatically generated using FHIR profiles and a terminology server. Furthermore, it describes how this ontology can be used in a user interface (UI) and how a mapping and a terminology tree created together with the ontology can translate user input into FHIR queries. Methods: We used the FHIR profiles from the GECCO data set combined with a terminology server to generate an ontology and the required mapping files for the translation. We analyzed the profiles and identified search criteria for the visual representation. In this process, we reduced the complex profiles to code value pairs for improved usability. We enriched our ontology with the necessary information to display it in a UI. We also developed an intermediate query language to transform the queries from the UI to federated FHIR requests. Separation of concerns resulted in discrepancies between the criteria used in the intermediate query format and the target query language. Therefore, a mapping was created to reintroduce all information relevant for creating the query in its target language. Further, we generated a tree representation of the ontology hierarchy, which allows resolving child concepts in the process. Results: In the scope of this project, 82 (99%) of 83 elements defined in the GECCO profile were successfully implemented. We verified our solution based on an independently developed test patient. A discrepancy between the test data and the criteria was found in 6 cases due to different versions used to generate the test data and the UI profiles, the support for specific code systems, and the evaluation of postcoordinated Systematized Nomenclature of Medicine (SNOMED) codes. Our results highlight the need for governance mechanisms for version changes, concept mapping between values from different code systems encoding the same concept, and support for different unit dimensions. Conclusions: We developed an automatic process to generate ontology and mapping files for FHIR-formatted data. Our tests found that this process works for most of our chosen FHIR profile criteria. The process established here works directly with FHIR profiles and a terminology server, making it extendable to other FHIR profiles and demonstrating that automatic ontology generation on FHIR profiles is feasible. UR - https://medinform.jmir.org/2022/4/e35789 UR - http://dx.doi.org/10.2196/35789 UR - http://www.ncbi.nlm.nih.gov/pubmed/35380548 ID - info:doi/10.2196/35789 ER - TY - JOUR AU - Chanyalew, Asressie Moges AU - Yitayal, Mezgebu AU - Atnafu, Asmamaw AU - Mengiste, Anagaw Shegaw AU - Tilahun, Binyam PY - 2022/4/22 TI - The Effectiveness of the Capacity Building and Mentorship Program in Improving Evidence-Based Decision-making in the Amhara Region, Northwest Ethiopia: Difference-in-Differences Study JO - JMIR Med Inform SP - e30518 VL - 10 IS - 4 KW - capacity building KW - mentorship KW - mentoring KW - mentor KW - training KW - data use KW - information use KW - facility head KW - department head KW - quasi-experiment KW - difference-in-differences KW - Ethiopia KW - Amhara KW - weak health information system KW - HIS KW - health information system KW - CBMP KW - DID KW - decision-making KW - Africa KW - evidence based KW - effectiveness N2 - Background: Weak health information systems (HISs) hobble countries? abilities to effectively manage and distribute their resources to match the burden of disease. The Capacity Building and Mentorship Program (CBMP) was implemented in select districts of the Amhara region of Ethiopia to improve HIS performance; however, evidence about the effectiveness of the intervention was meager. Objective: This study aimed to determine the effectiveness of routine health information use for evidence-based decision-making among health facility and department heads in the Amhara region, Northwest Ethiopia. Methods: The study was conducted in 10 districts of the Amhara region: five were in the intervention group and five were in the comparison group. We employed a quasi-experimental study design in the form of a pretest-posttest comparison group. Data were collected from June to July 2020 from the heads of departments and facilities in 36 intervention and 43 comparison facilities. The sample size was calculated using the double population formula, and we recruited 172 participants from each group. We applied a difference-in-differences analysis approach to determine the effectiveness of the intervention. Heterogeneity of program effect among subgroups was assessed using a triple differences method (ie, difference-in-difference-in-differences [DIDID] method). Thus, the ? coefficients, 95% CIs, and P values were calculated for each parameter, and we determined that the program was effective if the interaction term was significant at P<.05. Results: Data were collected using the endpoint survey from 155 out of 172 (90.1%) participants in the intervention group and 166 out of 172 (96.5%) participants in the comparison group. The average level of information use for the comparison group was 37.3% (95% CI 31.1%-43.6%) at baseline and 43.7% (95% CI 37.9%-49.5%) at study endpoint. The average level of information use for the intervention group was 52.2% (95% CI 46.2%-58.3%) at baseline and 75.8% (95% CI 71.6%-80.0%) at study endpoint. The study indicated that the net program change over time was 17% (95% CI 5%-28%; P=.003). The subgroup analysis also indicated that location showed significant program effect heterogeneity, with a DIDID estimate equal to 0.16 (95% CI 0.026-0.29; P=.02). However, sex, age, educational level, salary, and experience did not show significant heterogeneity in program effect, with DIDID estimates of 0.046 (95% CI ?0.089 to 0.182), ?0.002 (95% CI ?0.015 to 0.009), ?0.055 (95% CI ?0.190 to 0.079), ?1.63 (95% CI ?5.22 to 1.95), and ?0.006 (95% CI ?0.017 to 0.005), respectively. Conclusions: The CBMP was effective at enhancing the capacity of study participants in using the routine HIS for decision-making. We noted that urban facilities had benefited more than their counterparts. The intervention has been shown to produce positive outcomes and should be scaled up to be used in other districts. Moreover, the mentorship modalities for rural facilities should be redesigned to maximize the benefits. Trial Registration: Pan African Clinical Trials Registry PACTR202001559723931; https://tinyurl.com/3j7e5ka5 UR - https://medinform.jmir.org/2022/4/e30518 UR - http://dx.doi.org/10.2196/30518 UR - http://www.ncbi.nlm.nih.gov/pubmed/35451990 ID - info:doi/10.2196/30518 ER - TY - JOUR AU - Wang, Miye AU - Li, Sheyu AU - Zheng, Tao AU - Li, Nan AU - Shi, Qingke AU - Zhuo, Xuejun AU - Ding, Renxin AU - Huang, Yong PY - 2022/4/13 TI - Big Data Health Care Platform With Multisource Heterogeneous Data Integration and Massive High-Dimensional Data Governance for Large Hospitals: Design, Development, and Application JO - JMIR Med Inform SP - e36481 VL - 10 IS - 4 KW - big data platform in health care KW - multisource KW - heterogeneous KW - data integration KW - data governance KW - data application KW - data security KW - data quality control KW - big data KW - data science KW - medical informatics KW - health care N2 - Background: With the advent of data-intensive science, a full integration of big data science and health care will bring a cross-field revolution to the medical community in China. The concept big data represents not only a technology but also a resource and a method. Big data are regarded as an important strategic resource both at the national level and at the medical institutional level, thus great importance has been attached to the construction of a big data platform for health care. Objective: We aimed to develop and implement a big data platform for a large hospital, to overcome difficulties in integrating, calculating, storing, and governing multisource heterogeneous data in a standardized way, as well as to ensure health care data security. Methods: The project to build a big data platform at West China Hospital of Sichuan University was launched in 2017. The West China Hospital of Sichuan University big data platform has extracted, integrated, and governed data from different departments and sections of the hospital since January 2008. A master?slave mode was implemented to realize the real-time integration of multisource heterogeneous massive data, and an environment that separates heterogeneous characteristic data storage and calculation processes was built. A business-based metadata model was improved for data quality control, and a standardized health care data governance system and scientific closed-loop data security ecology were established. Results: After 3 years of design, development, and testing, the West China Hospital of Sichuan University big data platform was formally brought online in November 2020. It has formed a massive multidimensional data resource database, with more than 12.49 million patients, 75.67 million visits, and 8475 data variables. Along with hospital operations data, newly generated data are entered into the platform in real time. Since its launch, the platform has supported more than 20 major projects and provided data service, storage, and computing power support to many scientific teams, facilitating a shift in the data support model?from conventional manual extraction to self-service retrieval (which has reached 8561 retrievals per month). Conclusions: The platform can combine operation systems data from all departments and sections in a hospital to form a massive high-dimensional high-quality health care database that allows electronic medical records to be used effectively and taps into the value of data to fully support clinical services, scientific research, and operations management. The West China Hospital of Sichuan University big data platform can successfully generate multisource heterogeneous data storage and computing power. By effectively governing massive multidimensional data gathered from multiple sources, the West China Hospital of Sichuan University big data platform provides highly available data assets and thus has a high application value in the health care field. The West China Hospital of Sichuan University big data platform facilitates simpler and more efficient utilization of electronic medical record data for real-world research. UR - https://medinform.jmir.org/2022/4/e36481 UR - http://dx.doi.org/10.2196/36481 UR - http://www.ncbi.nlm.nih.gov/pubmed/35416792 ID - info:doi/10.2196/36481 ER - TY - JOUR AU - ­Lee, Sejong AU - Kim, Jaehyeon AU - Kwon, Yongseok AU - Kim, Teasung AU - Cho, Sunghyun PY - 2022/3/22 TI - Privacy Preservation in Patient Information Exchange Systems Based on Blockchain: System Design Study JO - J Med Internet Res SP - e29108 VL - 24 IS - 3 KW - electronic medical records KW - consortium blockchain KW - data security KW - medical data management KW - privacy preservation KW - smart contract KW - proxy re-encryption KW - patient-centered medical system KW - InterPlanetary File System N2 - Background: With the increasing sophistication of the medical industry, various advanced medical services such as medical artificial intelligence, telemedicine, and personalized health care services have emerged. The demand for medical data is also rapidly increasing today because advanced medical services use medical data such as user data and electronic medical records (EMRs) to provide services. As a result, health care institutions and medical practitioners are researching various mechanisms and tools to feed medical data into their systems seamlessly. However, medical data contain sensitive personal information of patients. Therefore, ensuring security while meeting the demand for medical data is a very important problem in the information age for which a solution is required. Objective: Our goal is to design a blockchain-based decentralized patient information exchange (PIE) system that can safely and efficiently share EMRs. The proposed system preserves patients? privacy in the EMRs through a medical information exchange process that includes data encryption and access control. Methods: We propose a blockchain-based EMR-sharing system that allows patients to manage their EMRs scattered across multiple hospitals and share them with other users. Our PIE system protects the patient?s EMR from security threats such as counterfeiting and privacy attacks during data sharing. In addition, it provides scalability by using distributed data-sharing methods to quickly share an EMR, regardless of its size or type. We implemented simulation models using Hyperledger Fabric, an open source blockchain framework. Results: We performed a simulation of the EMR-sharing process and compared it with previous works on blockchain-based medical systems to check the proposed system?s performance. During the simulation, we found that it takes an average of 0.01014 (SD 0.0028) seconds to download 1 MB of EMR in our proposed PIE system. Moreover, it has been confirmed that data can be freely shared with other users regardless of the size or format of the data to be transmitted through the distributed data-sharing technique using the InterPlanetary File System. We conducted a security analysis to check whether the proposed security mechanism can effectively protect users of the EMR-sharing system from security threats such as data forgery or unauthorized access, and we found that the distributed ledger structure and re-encryption?based data encryption method can effectively protect users? EMRs from forgery and privacy leak threats and provide data integrity. Conclusions: Blockchain is a distributed ledger technology that provides data integrity to enable patient-centered health information exchange and access control. PIE systems integrate and manage fragmented patient EMRs through blockchain and protect users from security threats during the data exchange process among users. To increase safety and efficiency in the EMR-sharing process, we used access control using security levels, data encryption based on re-encryption, and a distributed data-sharing scheme. UR - https://www.jmir.org/2022/3/e29108 UR - http://dx.doi.org/10.2196/29108 UR - http://www.ncbi.nlm.nih.gov/pubmed/35315778 ID - info:doi/10.2196/29108 ER - TY - JOUR AU - Rivera, M. Yonaira AU - Moran, B. Meghan AU - Thrul, Johannes AU - Joshu, Corinne AU - Smith, C. Katherine PY - 2022/3/4 TI - Contextualizing Engagement With Health Information on Facebook: Using the Social Media Content and Context Elicitation Method JO - J Med Internet Res SP - e25243 VL - 24 IS - 3 KW - mixed methods KW - data collection KW - social media KW - cancer KW - health information KW - Facebook KW - digital health N2 - Background: Most of what is known regarding health information engagement on social media stems from quantitative methodologies. Public health literature often quantifies engagement by measuring likes, comments, and/or shares of posts within health organizations? Facebook pages. However, this content may not represent the health information (and misinformation) generally available to and consumed by platform users. Furthermore, some individuals may prefer to engage with information without leaving quantifiable digital traces. Mixed methods approaches may provide a way of surpassing the constraints of assessing engagement with health information by using only currently available social media metrics. Objective: This study aims to discuss the limitations of current approaches in assessing health information engagement on Facebook and presents the social media content and context elicitation method, a qualitatively driven, mixed methods approach to understanding engagement with health information and how engagement may lead to subsequent actions. Methods: Data collection, management, and analysis using the social media content and context elicitation method are presented. This method was developed for a broader study exploring how and why US Latinos and Latinas engage with cancer prevention and screening information on Facebook. The study included 20 participants aged between 40 and 75 years without cancer who participated in semistructured, in-depth interviews to discuss their Facebook use and engagement with cancer information on the platform. Participants accessed their Facebook account alongside the researcher, typed cancer in the search bar, and discussed cancer-related posts they engaged with during the previous 12 months. Engagement was defined as liking, commenting, and/or sharing a post; clicking on a post link; reading an article in a post; and/or watching a video within a post. Content engagement prompted questions regarding the reasons for engagement and whether engagement triggered further action. Data were managed using MAXQDA (VERBI GmbH) and analyzed using thematic and content analyses. Results: Data emerging from the social media content and context elicitation method demonstrated that participants mainly engaged with cancer prevention and screening information by viewing and/or reading content (48/66, 73%) without liking, commenting, or sharing it. This method provided rich content regarding how US Latinos and Latinas engage with and act upon cancer prevention and screening information on Facebook. We present 2 emblematic cases from the main study to exemplify the additional information and context elicited from this methodology, which is currently lacking from quantitative approaches. Conclusions: The social media content and context elicitation method allows a better representation and deeper contextualization of how people engage with and act upon health information and misinformation encountered on social media. This method may be applied to future studies regarding how to best communicate health information on social media, including how these affect assessments of message credibility and accuracy, which can influence health outcomes. UR - https://www.jmir.org/2022/3/e25243 UR - http://dx.doi.org/10.2196/25243 UR - http://www.ncbi.nlm.nih.gov/pubmed/35254266 ID - info:doi/10.2196/25243 ER - TY - JOUR AU - Pilgrim, Katharina AU - Bohnet-Joschko, Sabine PY - 2022/2/21 TI - Effectiveness of Digital Forced-Choice Nudges for Voluntary Data Donation by Health Self-trackers in Germany: Web-Based Experiment JO - J Med Internet Res SP - e31363 VL - 24 IS - 2 KW - quantified self KW - health self-tracking KW - digital nudge KW - data donation KW - health data KW - mobile phone N2 - Background: Health self-tracking is an evidence-based approach to optimize health and well-being for personal self-improvement through lifestyle changes. At the same time, user-generated health-related data can be of particular value for (health care) research. As longitudinal data, these data can provide evidence for developing better and new medications, diagnosing rare diseases faster, or treating chronic diseases. Objective: This quantitative study aims to investigate the impact of digital forced-choice nudges on the willingness of German health self-trackers to donate self-tracked health-related data for research. This study contributes to the body of knowledge on the effectiveness of nonmonetary incentives. Our study enables a gender-specific statement on influencing factors on the voluntary donation of personal health data and, at the same time, on the effectiveness of digital forced-choice nudges within tracking apps. Methods: We implemented a digital experiment using a web-based questionnaire by graphical manipulation of the Runtastic tracking app interface. We asked 5 groups independently to indicate their willingness to donate tracked data for research. We used a digital forced-choice nudge via a pop-up window, which framed the data donation request with 4 different counter values. We generated the counter values according to the specific target group needs identified from the research literature. Results: A sample of 919 was generated, of which, 625 (68%) were women and 294 (32%) were men. By dividing the sample into male and female participants, we take into account research on gender differences in privacy tendencies on the web and offline, showing that female participants display higher privacy concerns than male participants. A statistical group comparison shows that with a small effect size (r=0.21), men are significantly more likely (P=.04) to donate their self-tracked data for research if the need to take on social responsibility is addressed (the prosocial counter value in this case?contributing to society) compared with the control group without counter value. Selfish or pseudoprosocial counter values had no significant effect on willingness to donate health data among male or female health self-trackers in Germany when presented as a forced-choice nudge within a tracking app. Conclusions: Although surveys regularly reveal an 80% to 95% willingness to donate data on average in the population, our results show that only 41% (377/919) of the health self-trackers would donate their self-collected health data to research. Although selfish motives do not significantly influence willingness to donate, linking data donation to added societal value could significantly increase the likelihood of donating among male self-trackers by 15.5%. Thus, addressing the need to contribute to society promotes the willingness to donate data among male health self-trackers. The implementation of forced-choice framing nudges within tracking apps presented in a pop-up window can add to the accessibility of user-generated health-related data for research. UR - https://www.jmir.org/2022/2/e31363 UR - http://dx.doi.org/10.2196/31363 UR - http://www.ncbi.nlm.nih.gov/pubmed/35188472 ID - info:doi/10.2196/31363 ER - TY - JOUR AU - Alhajri, Noora AU - Simsekler, Emre Mecit Can AU - Alfalasi, Buthaina AU - Alhashmi, Mohamed AU - Memon, Hamda AU - Housser, Emma AU - Abdi, Mustafa Abdulhamid AU - Balalaa, Nahed AU - Al Ali, Maryam AU - Almaashari, Raghda AU - Al Memari, Shammah AU - Al Hosani, Farida AU - Al Zaabi, Yousif AU - Almazrouei, Shereena AU - Alhashemi, Hamed PY - 2022/2/15 TI - Exploring Quality Differences in Telemedicine Between Hospital Outpatient Departments and Community Clinics: Cross-sectional Study JO - JMIR Med Inform SP - e32373 VL - 10 IS - 2 KW - COVID-19 KW - patient satisfaction KW - technology acceptance KW - hospital KW - community clinic KW - video consultation KW - audio consultation KW - outpatient department KW - OPD KW - policy making KW - UAE N2 - Background: Telemedicine is a care delivery modality that has the potential to broaden the reach and flexibility of health care services. In the United Arab Emirates, telemedicine services are mainly delivered through either integrated hospital outpatient department (OPDs) or community clinics. However, it is unknown if patients? perceptions of, and satisfaction with, telemedicine services differ between these two types of health care systems during the COVID-19 pandemic. Objective: We aimed to explore the differences in patients? perceptions of, and satisfaction with, telemedicine between hospital OPDs and community clinics during the COVID-19 pandemic. We also aimed to identify patient- or visit-related characteristics contributing to patient satisfaction with telemedicine. Methods: In this cross-sectional study that was conducted at Abu Dhabi health care centers, we invited outpatients aged 18 years or over, who completed a telemedicine visit during the COVID-19 pandemic, to participate in our study. Patients? perceptions of, and satisfaction with, telemedicine regarding the two system types (ie, hospital OPDs and community clinics) were assessed using an online survey that was sent as a link through the SMS system. Regression models were used to describe the association between patient- and visit-related characteristics, as well as the perception of, and satisfaction with, telemedicine services. Results: A total of 515 patients participated in this survey. Patients? satisfaction with telemedicine services was equally high among the settings, with no statistically significant difference between the two setting types (hospital OPDs: 253/343, 73.8%; community clinics: 114/172, 66.3%; P=.19). Video consultation was significantly associated with increased patient satisfaction (odds ratio [OR] 2.57, 95% CI 1.04-6.33; P=.04) and patients? support of the transition to telemedicine use during and after the pandemic (OR 2.88, 95% CI 1.18-7.07; P=.02). Patients who used video consultations were more likely to report that telemedicine improved access to health care services (OR 3.06, 95% CI 1.71-8.03; P=.02), reduced waiting times and travel costs (OR 4.94, 95% CI 1.15-21.19; P=.03), addressed patients? needs (OR 2.63, 95% CI 1.13-6.11; P=.03), and eased expression of patients? medical concerns during the COVID-19 pandemic (OR 2.19, 95% CI 0.89-5.38; P=.09). Surprisingly, middle-aged patients were two times more likely to be satisfied with telemedicine services (OR 2.12, 95% CI 1.09-4.14; P=.03), as compared to any other age group in this study. Conclusions: These findings suggest that patient satisfaction was unaffected by the health system setting in which patients received the teleconsultations, whether they were at hospitals or community clinics. Video consultation was associated with increased patient satisfaction with telemedicine services. Efforts should be focused on strategic planning for enhanced telemedicine services, video consultation in particular, for both emergent circumstances, such as the COVID-19 pandemic, and day-to-day health care delivery. UR - https://medinform.jmir.org/2022/2/e32373 UR - http://dx.doi.org/10.2196/32373 UR - http://www.ncbi.nlm.nih.gov/pubmed/34978281 ID - info:doi/10.2196/32373 ER - TY - JOUR AU - Naeem, Iffat AU - Quan, Hude AU - Singh, Shaminder AU - Chowdhury, Nashit AU - Chowdhury, Mohammad AU - Saini, Vineet AU - TC, Turin PY - 2022/2/9 TI - Factors Associated With Willingness to Share Health Information: Rapid Review JO - JMIR Hum Factors SP - e20702 VL - 9 IS - 1 KW - health information KW - information sharing KW - health data KW - EMR KW - PHR KW - mobile phone N2 - Background: To expand research and strategies to prevent disease, comprehensive and real-time data are essential. Health data are increasingly available from platforms such as pharmaceuticals, genomics, health care imaging, medical procedures, wearable devices, and internet activity. Further, health data are integrated with an individual?s sociodemographic information, medical conditions, genetics, treatments, and health care. Ultimately, health information generation and flow are controlled by the patient or participant; however, there is a lack of understanding about the factors that influence willingness to share health information. A synthesis of the current literature on the multifactorial nature of health information sharing preferences is required to understand health information exchange. Objective: The objectives of this review are to identify peer-reviewed literature that reported factors associated with health information sharing and to organize factors into cohesive themes and present a narrative synthesis of factors related to willingness to share health information. Methods: This review uses a rapid review methodology to gather literature regarding willingness to share health information within the context of eHealth, which includes electronic health records, personal health records, mobile health information, general health information, or information on social determinants of health. MEDLINE and Google Scholar were searched using keywords such as electronic health records AND data sharing OR sharing preference OR willingness to share. The search was limited to any population that excluded health care workers or practitioners, and the participants aged ?18 years within the US or Canadian context. The data abstraction process using thematic analysis where any factors associated with sharing health information were highlighted and coded inductively within each article. On the basis of shared meaning, the coded factors were collated into major themes. Results: A total of 26 research articles met our inclusion criteria and were included in the qualitative analysis. The inductive thematic coding process revealed multiple major themes related to sharing health information. Conclusions: This review emphasized the importance of data generators? viewpoints and the complex systems of factors that shape their decision to share health information. The themes explored in this study emphasize the importance of trust at multiple levels to develop effective information exchange partnerships. In the case of improving precision health care, addressing the factors presented here that influence willingness to share information can improve sharing capacity for individuals and allow researchers to reorient their methods to address hesitation in sharing health information. UR - https://humanfactors.jmir.org/2022/1/e20702 UR - http://dx.doi.org/10.2196/20702 UR - http://www.ncbi.nlm.nih.gov/pubmed/35138263 ID - info:doi/10.2196/20702 ER - TY - JOUR AU - Devriendt, Thijs AU - Borry, Pascal AU - Shabani, Mahsa PY - 2022/1/13 TI - Credit and Recognition for Contributions to Data-Sharing Platforms Among Cohort Holders and Platform Developers in Europe: Interview Study JO - J Med Internet Res SP - e25983 VL - 24 IS - 1 KW - information dissemination KW - qualitative research KW - ethics KW - database management systems KW - cohort studies KW - science policy KW - incentives KW - rewards N2 - Background: The European Commission is funding projects that aim to establish data-sharing platforms. These platforms are envisioned to enhance and facilitate the international sharing of cohort data. Nevertheless, broad data sharing may be restricted by the lack of adequate recognition for those who share data. Objective: The aim of this study is to describe in depth the concerns about acquiring credit for data sharing within epidemiological research. Methods: A total of 17 participants linked to European Union?funded data-sharing platforms were recruited for a semistructured interview. Transcripts were analyzed using inductive content analysis. Results: Interviewees argued that data sharing within international projects could challenge authorship guidelines in multiple ways. Some respondents considered that the acquisition of credit for articles with extensive author lists could be problematic in some instances, such as for junior researchers. In addition, universities may be critical of researchers who share data more often than leading research. Some considered that the evaluation system undervalues data generators and specialists. Respondents generally looked favorably upon alternatives to the current evaluation system to potentially ameliorate these issues. Conclusions: The evaluation system might impede data sharing because it mainly focuses on first and last authorship and undervalues the contributor?s work. Further movement of crediting models toward contributorship could potentially address this issue. Appropriate crediting mechanisms that are better aligned with the way science ought to be conducted in the future need to be developed. UR - https://www.jmir.org/2022/1/e25983 UR - http://dx.doi.org/10.2196/25983 UR - http://www.ncbi.nlm.nih.gov/pubmed/35023849 ID - info:doi/10.2196/25983 ER - TY - JOUR AU - Yeung, Karen PY - 2021/12/20 TI - The Health Care Sector?s Experience of Blockchain: A Cross-disciplinary Investigation of Its Real Transformative Potential JO - J Med Internet Res SP - e24109 VL - 23 IS - 12 KW - blockchain KW - health information management KW - health information systems KW - electronic health record KW - data sharing KW - health services administration KW - privacy of patient data KW - computer security KW - mobile phone N2 - Background: Academic literature highlights blockchain?s potential to transform health care, particularly by seamlessly and securely integrating existing data silos while enabling patients to exercise automated, fine-grained control over access to their electronic health records. However, no serious scholarly attempt has been made to assess how these technologies have in fact been applied to real-world health care contexts. Objective: The primary aim of this paper is to assess whether blockchain?s theoretical potential to deliver transformative benefits to health care is likely to become a reality by undertaking a critical investigation of the health care sector?s actual experience of blockchain technologies to date. Methods: This mixed methods study entailed a series of iterative, in-depth, theoretically oriented, desk-based investigations and 2 focus group investigations. It builds on the findings of a companion research study documenting real-world engagement with blockchain technologies in health care. Data were sourced from academic and gray literature from multiple disciplinary perspectives concerned with the configuration, design, and functionality of blockchain technologies. The analysis proceeded in 3 stages. First, it undertook a qualitative investigation of observed patterns of blockchain for health care engagement to identify the application domains, data-sharing problems, and the challenges encountered to date. Second, it critically compared these experiences with claims about blockchain?s potential benefits in health care. Third, it developed a theoretical account of challenges that arise in implementing blockchain in health care contexts, thus providing a firmer foundation for appraising its future prospects in health care. Results: Health care organizations have actively experimented with blockchain technologies since 2016 and have demonstrated proof of concept for several applications (use cases) primarily concerned with administrative data and to facilitate medical research by enabling algorithmic models to be trained on multiple disparately located sets of patient data in a secure, privacy-preserving manner. However, blockchain technology is yet to be implemented at scale in health care, remaining largely in its infancy. These early experiences have demonstrated blockchain?s potential to generate meaningful value to health care by facilitating data sharing between organizations in circumstances where computational trust can overcome a lack of social trust that might otherwise prevent valuable cooperation. Although there are genuine prospects of using blockchain to bring about positive transformations in health care, the successful development of blockchain for health care applications faces a number of very significant, multidimensional, and highly complex challenges. Early experience suggests that blockchain is unlikely to rapidly and radically revolutionize health care. Conclusions: The successful development of blockchain for health care applications faces numerous significant, multidimensional, and complex challenges that will not be easily overcome, suggesting that blockchain technologies are unlikely to revolutionize health care in the near future. UR - https://www.jmir.org/2021/12/e24109 UR - http://dx.doi.org/10.2196/24109 UR - http://www.ncbi.nlm.nih.gov/pubmed/34932009 ID - info:doi/10.2196/24109 ER - TY - JOUR AU - Neves, Luisa Ana AU - Smalley, R. Katelyn AU - Freise, Lisa AU - Harrison, Paul AU - Darzi, Ara AU - Mayer, K. Erik PY - 2021/11/11 TI - Determinants of Use of the Care Information Exchange Portal: Cross-sectional Study JO - J Med Internet Res SP - e23481 VL - 23 IS - 11 KW - patient portals KW - electronic health records KW - patient participation N2 - Background: Sharing electronic health records with patients has been shown to improve patient safety and quality of care. Patient portals represent a convenient tool to enhance patient access to their own health care data. However, the success of portals will only be possible through sustained adoption by its end users: the patients. A better understanding of the characteristics of users and nonusers is critical for understanding which groups remain excluded from using such tools. Objective: This study aims to identify the determinants of the use of the Care Information Exchange, a shared patient portal program in the United Kingdom. Methods: A cross-sectional study was conducted using a web-based questionnaire. Information collected included age, gender, ethnicity, educational level, health status, postcode, and digital literacy. Registered individuals were defined as having had an account created in the portal, independent of their actual use of the platform; users were defined as having ever used the portal. Multivariate logistic regression was used to model the probability of being a user. Statistical analysis was performed in R and Tableau was used to create maps of the proportion of Care Information Exchange users by postcode area. Results: A total of 1083 participants replied to the survey (186% of the estimated minimum target sample). The proportion of users was 61.58% (667/1083). Among these, most (385/667, 57.7%) used the portal at least once a month. To characterize the system?s users and nonusers, we performed a subanalysis of the sample, including only participants who had provided at least information regarding gender and age. The subanalysis included 650 individuals (389/650, 59.8% women; 551/650, 84.8% >40 years). Most participants were White (498/650, 76.6%) and resided in London (420/650, 64.6%). Individuals with a higher educational degree (undergraduate and professional, or postgraduate and higher) had higher odds of being a portal user (adjusted odds ratio [OR] 1.58, 95% CI 1.04-2.39 and OR 2.38, 95% CI 1.42-4.02, respectively) compared with those with a secondary degree or below. Higher digital literacy scores (?30) were associated with higher odds of being a user (adjusted OR 2.96, 95% CI 2.02-4.35). Those with a good overall health status had lower odds of being a user (adjusted OR 0.58, 95% CI 0.37-0.91). Conclusions: This work adds to the growing body of evidence highlighting the importance of educational aspects (educational level and digital literacy) in the adoption of patient portals. Further research should not only describe but also systematically address these inequalities through patient-centered interventions aimed at reducing the digital divide. Health care providers and policy makers must partner in investing and delivering strategic programs that improve access to technology and digital literacy in an effort to improve digital inclusion and reduce inequities in the delivery of care. UR - https://www.jmir.org/2021/11/e23481 UR - http://dx.doi.org/10.2196/23481 UR - http://www.ncbi.nlm.nih.gov/pubmed/34762063 ID - info:doi/10.2196/23481 ER - TY - JOUR AU - Cochran, A. Randyl AU - Feldman, S. Sue AU - Ivankova, V. Nataliya AU - Hall, G. Allyson AU - Opoku-Agyeman, William PY - 2021/5/27 TI - Intention to Use Behavioral Health Data From a Health Information Exchange: Mixed Methods Study JO - JMIR Ment Health SP - e26746 VL - 8 IS - 5 KW - behavioral health KW - integrated care KW - health information exchange KW - behavioral intention KW - patient care KW - mixed methods research N2 - Background: Patients with co-occurring behavioral health and chronic medical conditions frequently overuse inpatient hospital services. This pattern of overuse contributes to inefficient health care spending. These patients require coordinated care to achieve optimal health outcomes. However, the poor exchange of health-related information between various clinicians renders the delivery of coordinated care challenging. Health information exchanges (HIEs) facilitate health-related information sharing and have been shown to be effective in chronic disease management; however, their effectiveness in the delivery of integrated care is less clear. It is prudent to consider new approaches to sharing both general medical and behavioral health information. Objective: This study aims to identify and describe factors influencing the intention to use behavioral health information that is shared through HIEs. Methods: We used a mixed methods design consisting of two sequential phases. A validated survey instrument was emailed to clinical and nonclinical staff in Alabama and Oklahoma. The survey captured information about the impact of predictors on the intention to use behavioral health data in clinical decision making. Follow-up interviews were conducted with a subsample of participants to elaborate on the survey results. Partial least squares structural equation modeling was used to analyze survey data. Thematic analysis was used to identify themes from the interviews. Results: A total of 62 participants completed the survey. In total, 63% (n=39) of the participants were clinicians. Performance expectancy (?=.382; P=.01) and trust (?=.539; P<.001) predicted intention to use behavioral health information shared via HIEs. The interviewees (n=5) expressed that behavioral health information could be useful in clinical decision making. However, privacy and confidentiality concerns discourage sharing this information, which is generally missing from patient records altogether. The interviewees also stated that training for HIE use was not mandatory; the training that was provided did not focus specifically on the exchange of behavioral health information. Conclusions: Despite barriers, individuals are willing to use behavioral health information from HIEs if they believe that it will enhance job performance and if the information being transmitted is trustworthy. The findings contribute to our understanding of the role HIEs can play in delivering integrated care, particularly to vulnerable patients. UR - https://mental.jmir.org/2021/5/e26746 UR - http://dx.doi.org/10.2196/26746 UR - http://www.ncbi.nlm.nih.gov/pubmed/34042606 ID - info:doi/10.2196/26746 ER - TY - JOUR AU - Dixon, E. Brian AU - Luckhurst, Cherie AU - Haggstrom, A. David PY - 2021/2/22 TI - Leadership Perspectives on Implementing Health Information Exchange: Qualitative Study in a Tertiary Veterans Affairs Medical Center JO - JMIR Med Inform SP - e19249 VL - 9 IS - 2 KW - health information exchange KW - veterans KW - operations research KW - electronic health record KW - Indiana KW - organization N2 - Background: The US Department of Veterans Affairs (VA) seeks to achieve interoperability with other organizations, including non-VA community and regional health information exchanges (HIEs). Objective: This study aims to understand the perspectives of leaders involved in implementing information exchange between VA and non-VA providers via a community HIE. Methods: We interviewed operational, clinical, and information technology leaders at one VA facility and its community HIE partner. Respondents discussed their experiences with VA-HIE, including barriers and facilitators to implementation, and the associated impact on health care providers. Transcribed interviews were coded and analyzed using immersion-crystallization methods. Results: VA and community HIE leaders found training to be a key factor when implementing VA-HIE and worked cooperatively to provide several styles and locations of training. During recruitment, a high-touch approach was successfully used to enroll patients and overcome their resistance to opting in. Discussion with leaders revealed the high levels of complexity navigated by VA providers and staff to send and retrieve information. Part of the complexity stemmed from the interconnected web of information systems and human teams necessary to implement VA-HIE information sharing. These interrelationships must be effectively managed to guide organizational decision making. Conclusions: Organizational leaders perceived information sharing to be of essential value in delivering high-quality, coordinated health care. The VA continues to increase access to outside care through the VA Maintaining Internal Systems and Strengthening Integrated Outside Networks (MISSION) Act. Along with this increase in non-VA medical care, there is a need for greater information sharing between VA and non-VA health care organizations. Insights by leaders into barriers and facilitators to VA-HIE can be applied by other national and regional networks that seek to achieve interoperability across health care delivery systems. UR - https://medinform.jmir.org/2021/2/e19249 UR - http://dx.doi.org/10.2196/19249 UR - http://www.ncbi.nlm.nih.gov/pubmed/33616542 ID - info:doi/10.2196/19249 ER - TY - JOUR AU - Inau, Thea Esther AU - Sack, Jean AU - Waltemath, Dagmar AU - Zeleke, Alamirrew Atinkut PY - 2021/2/2 TI - Initiatives, Concepts, and Implementation Practices of FAIR (Findable, Accessible, Interoperable, and Reusable) Data Principles in Health Data Stewardship Practice: Protocol for a Scoping Review JO - JMIR Res Protoc SP - e22505 VL - 10 IS - 2 KW - data stewardship KW - FAIR data principles KW - health research KW - PRISMA KW - scoping review N2 - Background: Data stewardship is an essential driver of research and clinical practice. Data collection, storage, access, sharing, and analytics are dependent on the proper and consistent use of data management principles among the investigators. Since 2016, the FAIR (findable, accessible, interoperable, and reusable) guiding principles for research data management have been resonating in scientific communities. Enabling data to be findable, accessible, interoperable, and reusable is currently believed to strengthen data sharing, reduce duplicated efforts, and move toward harmonization of data from heterogeneous unconnected data silos. FAIR initiatives and implementation trends are rising in different facets of scientific domains. It is important to understand the concepts and implementation practices of the FAIR data principles as applied to human health data by studying the flourishing initiatives and implementation lessons relevant to improved health research, particularly for data sharing during the coronavirus pandemic. Objective: This paper aims to conduct a scoping review to identify concepts, approaches, implementation experiences, and lessons learned in FAIR initiatives in the health data domain. Methods: The Arksey and O?Malley stage-based methodological framework for scoping reviews will be used for this review. PubMed, Web of Science, and Google Scholar will be searched to access relevant primary and grey publications. Articles written in English and published from 2014 onwards with FAIR principle concepts or practices in the health domain will be included. Duplication among the 3 data sources will be removed using a reference management software. The articles will then be exported to a systematic review management software. At least two independent authors will review the eligibility of each article based on defined inclusion and exclusion criteria. A pretested charting tool will be used to extract relevant information from the full-text papers. Qualitative thematic synthesis analysis methods will be employed by coding and developing themes. Themes will be derived from the research questions and contents in the included papers. Results: The results will be reported using the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-analyses Extension for Scoping Reviews) reporting guidelines. We anticipate finalizing the manuscript for this work in 2021. Conclusions: We believe comprehensive information about the FAIR data principles, initiatives, implementation practices, and lessons learned in the FAIRification process in the health domain is paramount to supporting both evidence-based clinical practice and research transparency in the era of big data and open research publishing. International Registered Report Identifier (IRRID): PRR1-10.2196/22505 UR - https://www.researchprotocols.org/2021/2/e22505 UR - http://dx.doi.org/10.2196/22505 UR - http://www.ncbi.nlm.nih.gov/pubmed/33528373 ID - info:doi/10.2196/22505 ER - TY - JOUR AU - Guinez-Molinos, Sergio AU - Andrade, María José AU - Medina Negrete, Alejandro AU - Espinoza Vidal, Sonia AU - Rios, Elvis PY - 2021/1/20 TI - Interoperable Platform to Report Polymerase Chain Reaction SARS-CoV-2 Tests From Laboratories to the Chilean Government: Development and Implementation Study JO - JMIR Med Inform SP - e25149 VL - 9 IS - 1 KW - COVID-19 KW - SARS-CoV-2 KW - interoperability KW - laboratory information system KW - HL7 FHIR KW - PCR N2 - Background: Testing, traceability, and isolation actions are a central strategy defined by the World Health Organization to contain the COVID-19 pandemic. In this sense, the countries have had difficulties in counting the number of people infected with SARS-CoV-2. Errors in reporting results are a common factor, as well as the lack of interoperability between laboratories and governments. Approaches aimed at sending spreadsheets via email expose patients? privacy and have increased the probability of errors due to retyping, which generates a delay in the notification of results. Objective: This study aims to design and develop an interoperable platform to report polymerase chain reaction (PCR) SARS-CoV-2 tests from laboratories to the Chilean government. Methods: The methodology to design and develop the interoperable platform was comprised of six well-structured stages: (1) creation of a minimum data set for PCR SARS-CoV-2 tests, (2) modeling processes and end points where institutions interchange information, (3) standards and interoperability design, (4) software development, (5) software testing, and (6) software implementation. Results: The interoperable Fast Healthcare Interoperability Resources (FHIR) platform to report PCR SARS-CoV-2 tests from laboratories to the Chilean government was successfully implemented. The platform was designed, developed, tested, and implemented following a structured methodology. The platform?s performance to 1000 requests resulted in a response time of 240 milliseconds, throughput of 28.3 requests per second, and process management time of 131 milliseconds. The security was assured through a private network exclusive to the Ministry of Health to ensure confidentiality and integrity. The authorization and authentication of laboratories were implemented with a JavaScript Object Notation Web Token. All the PCR SARS-CoV-2 tests were accessible through an application programming interface gateway with valid credentials and the right access control list. Conclusions: The platform was implemented and is currently being used by UC Christus Laboratory. The platform is secure. It was tested adequately for confidentiality, secure authorization, authentication, and message integrity. This platform simplifies the reporting of PCR SARS-CoV-2 tests and reduces the time and probability of mistakes in counting positive cases. The interoperable solution with FHIR is working successfully and is open for the community, laboratories, and any institution that needs to report PCR SARS-CoV-2 tests. UR - http://medinform.jmir.org/2021/1/e25149/ UR - http://dx.doi.org/10.2196/25149 UR - http://www.ncbi.nlm.nih.gov/pubmed/33417587 ID - info:doi/10.2196/25149 ER - TY - JOUR AU - Hager, Andreas AU - Lindblad, Staffan AU - Brommels, Mats AU - Salomonsson, Stina AU - Wannheden, Carolina PY - 2021/1/19 TI - Sharing Patient-Controlled Real-World Data Through the Application of the Theory of Commons: Action Research Case Study JO - J Med Internet Res SP - e16842 VL - 23 IS - 1 KW - knowledge commons KW - learning networks KW - patient and family centered care KW - eHealth N2 - Background: Technological advances have radically changed the opportunities for individuals with chronic conditions to practice self-care and to coproduce health care and research. Digital technologies enable patients to perform tasks traditionally carried out by health care professionals in a more convenient way, at lower costs, and without compromising quality. Patients may also share real-world data with other stakeholders to promote individual and population health. However, there is a need for legal frameworks that enable patient privacy and control in such sharing of real-world data. We believe that this need could be met by the conceptualization of patient-controlled real-world data as knowledge commons, which is a resource shared by a group of people. Objective: This study aimed to propose a conceptual model that describes how patient-controlled real-world data can be shared effectively in chronic care management, in a way that supports individual and population health, while respecting personal data privacy and control. Methods: An action research approach was used to develop a solution to enable patients, in a self-determined way, to share patient-controlled data to other settings. We chose the context of cystic fibrosis (CF) care in Sweden, where coproduction between patients, their families, and health care professionals is critical in the introduction of new drugs. The first author, who is a lawyer and parent of children with CF, was a driver in the change process. All coauthors collaborated in the analysis. We collected primary and secondary data reflecting changes during the time period from 2012 to 2020, and performed a qualitative content analysis guided by the knowledge commons framework. Results: Through a series of changes, a national system for enabling patients to share patient-controlled real-world data to different stakeholders in CF care was implemented. The case analysis resulted in a conceptual model consisting of the following three knowledge commons arenas that contributed to patient-controlled real-world data collection, use, and sharing: (1) patient world arena involving the private sphere of patients and families; (2) clinical microsystem arena involving the professional sphere at frontline health care clinics; and (3) round table arena involving multiple stakeholders from different settings. Based on the specification of property rights, as presented in our model, the patient can keep control over personal health information and may grant use rights to other stakeholders. Conclusions: Health information exchanges for sharing patient-controlled real-world data are pivotal to enable patients, health care professionals, health care funders, researchers, authorities, and the industry to coproduce high-quality care and to introduce and follow-up novel health technologies. Our model proposes how technical and legal structures that protect the integrity and self-determination of patients can be implemented, which may be applicable in other chronic care settings as well. UR - http://www.jmir.org/2021/1/e16842/ UR - http://dx.doi.org/10.2196/16842 UR - http://www.ncbi.nlm.nih.gov/pubmed/33464212 ID - info:doi/10.2196/16842 ER - TY - JOUR AU - Gulden, Christian AU - Blasini, Romina AU - Nassirian, Azadeh AU - Stein, Alexandra AU - Altun, Betül Fatma AU - Kirchner, Melanie AU - Prokosch, Hans-Ulrich AU - Boeker, Martin PY - 2021/1/12 TI - Prototypical Clinical Trial Registry Based on Fast Healthcare Interoperability Resources (FHIR): Design and Implementation Study JO - JMIR Med Inform SP - e20470 VL - 9 IS - 1 KW - clinical trials KW - trials registry KW - health information interoperability KW - data sharing KW - HL7 FHIR N2 - Background: Clinical trial registries increase transparency in medical research by making information and results of planned, ongoing, and completed studies publicly available. However, the registration of clinical trials remains a time-consuming manual task complicated by the fact that the same studies often need to be registered in different registries with different data entry requirements and interfaces. Objective: This study investigates how Health Level 7 (HL7) Fast Healthcare Interoperability Resources (FHIR) may be used as a standardized format for exchanging and storing clinical trial records. Methods: We designed and prototypically implemented an open-source central trial registry containing records from university hospitals, which are automatically exported and updated by local study management systems. Results: We provided an architecture and implementation of a multisite clinical trials registry based on HL7 FHIR as a data storage and exchange format. Conclusions: The results show that FHIR resources establish a harmonized view of study information from heterogeneous sources by enabling automated data exchange between trial centers and central study registries. UR - https://medinform.jmir.org/2021/1/e20470 UR - http://dx.doi.org/10.2196/20470 UR - http://www.ncbi.nlm.nih.gov/pubmed/33433393 ID - info:doi/10.2196/20470 ER - TY - JOUR AU - Lee, Keehyuck AU - Lim, Kahyun AU - Jung, Young Se AU - Ji, Hyerim AU - Hong, Kyungpyo AU - Hwang, Hee AU - Lee, Ho-Young PY - 2020/11/13 TI - Perspectives of Patients, Health Care Professionals, and Developers Toward Blockchain-Based Health Information Exchange: Qualitative Study JO - J Med Internet Res SP - e18582 VL - 22 IS - 11 KW - blockchain KW - health information exchange KW - qualitative study N2 - Background: Although the electronic health record system adoption rate has reached 96% in the United States, implementation and usage of health information exchange (HIE) is still lagging behind. Blockchain has come into the spotlight as a technology to solve this problem. However, there have been no studies assessing the perspectives of different stakeholders regarding blockchain-based patient-centered HIE. Objective: The objective of this study was to analyze the awareness among patients, health care professionals, and information technology developers toward blockchain-based HIE, and compare their different perspectives related to the platform using a qualitative research methodology. Methods: In this qualitative study, we applied grounded theory and the Promoting Action on Research Implementation in the Health Service (PARiHS) framework. We interviewed 7 patients, 7 physicians, and 7 developers, for a total of 21 interviewees. Results: Regarding the leakage of health information, the patient group did not have concerns in contrast to the physician and developer groups. Physicians were particularly concerned about the fact that errors in the data cannot be easily fixed due to the nature of blockchain technology. Patients were not against the idea of providing information for clinical trials or research institutions. They wished to be provided with the results of clinical research rather than being compensated for providing data. The developers emphasized that blockchain must be technically mature before it can be applied to the health care scene, and standards of medical information to be exchanged must first be established. Conclusions: The three groups? perceptions of blockchain were generally positive about the idea of patients having the control of sharing their own health information. However, they were skeptical about the cooperation among various institutions and implementation for data standardization in the establishment process, in addition to how the service will be employed in practice. Taking these factors into consideration during planning, development, and operation of a platform will contribute to establishing practical treatment plans and tracking in a more convenient manner for both patients and physicians. Furthermore, it will help expand the related research and health management industry based on blockchain. UR - http://www.jmir.org/2020/11/e18582/ UR - http://dx.doi.org/10.2196/18582 UR - http://www.ncbi.nlm.nih.gov/pubmed/33185553 ID - info:doi/10.2196/18582 ER - TY - JOUR AU - Hauser, G. Ronald AU - Bhargava, Ankur AU - Talmage, Ronald AU - Aslan, Mihaela AU - Concato, John PY - 2020/10/27 TI - Data Object Exchange (DOEx) as a Method to Facilitate Intraorganizational Collaboration by Managed Data Sharing: Viewpoint JO - JMIR Med Inform SP - e19267 VL - 8 IS - 10 KW - information-seeking behavior KW - information services KW - communication media KW - database KW - database management system N2 - Background: To help reduce expenses, shorten timelines, and improve the quality of final deliverables, the Veterans Health Administration (VA) and other health care systems promote sharing of expertise among informatics user groups. Traditional barriers to time-efficient sharing of expertise include difficulties in finding potential collaborators and availability of a mechanism to share expertise. Objective: We aim to describe how the VA shares expertise among its informatics groups by describing a custom-built tool, the Data Object Exchange (DOEx), along with statistics on its usage. Methods: A centrally managed web application was developed in the VA to share informatics expertise using database objects. Visitors to the site can view a catalog of objects published by other informatics user groups. Requests for subscription and publication made through the site are routed to database administrators, who then actualize the resource requests through modifications of database object permissions. Results: As of April 2019, the DOEx enabled the publication of 707 database objects to 1202 VA subscribers from 758 workgroups. Overall, over 10,000 requests are made each year regarding permissions on these shared database objects, involving diverse information. Common ?flavors? of shared data include disease-specific study populations (eg, patients with asthma), common data definitions (eg, hemoglobin laboratory results), and results of complex analyses (eg, models of anticipated resource utilization). Shared database objects also enable construction of community-built data pipelines. Conclusions: To increase the efficiency of informatics user groups, a method was developed to facilitate intraorganizational collaboration by managed data sharing. The advantages of this system include (1) reduced duplication of work (thereby reducing expenses and shortening timelines) and (2) higher quality of work based on simplifying the adoption of specialized knowledge among groups. UR - http://medinform.jmir.org/2020/10/e19267/ UR - http://dx.doi.org/10.2196/19267 UR - http://www.ncbi.nlm.nih.gov/pubmed/33107829 ID - info:doi/10.2196/19267 ER - TY - JOUR AU - Savage, Mark AU - Savage, Clara Lucia PY - 2020/9/2 TI - Doctors Routinely Share Health Data Electronically Under HIPAA, and Sharing With Patients and Patients? Third-Party Health Apps is Consistent: Interoperability and Privacy Analysis JO - J Med Internet Res SP - e19818 VL - 22 IS - 9 KW - digital health KW - privacy KW - interoperability KW - mobile phone, smartphone KW - electronic health records KW - EHR KW - patient access KW - patient engagement KW - Health Insurance Portability and Accountability Act KW - HIPAA KW - Health Information Technology for Economic and Clinical Health Act KW - HITECH KW - covered entity KW - business associate KW - protected health information KW - PHI KW - digital health applications KW - apps UR - https://www.jmir.org/2020/9/e19818 UR - http://dx.doi.org/10.2196/19818 UR - http://www.ncbi.nlm.nih.gov/pubmed/32876582 ID - info:doi/10.2196/19818 ER - TY - JOUR AU - Li, Yazi AU - Lu, Chunji AU - Liu, Yang PY - 2020/9/1 TI - Medical Insurance Information Systems in China: Mixed Methods Study JO - JMIR Med Inform SP - e18780 VL - 8 IS - 9 KW - medical insurance KW - medical insurance information system KW - health information exchange KW - information infrastructure KW - big data KW - policy review KW - privacy protection N2 - Background: Since the People?s Republic of China (PRC), or China, established the basic medical insurance system (MIS) in 1998, the medical insurance information systems (MIISs) in China have effectively supported the operation of the MIS through several phases of development; the phases included a stand-alone version, the internet, and big data. In 2018, China?s national medical security systems were integrated, while MIISs were facing reconstruction. We summarized China?s experience in medical insurance informatization over the past 20 years, aiming to provide a reference for the building of a new basic MIS for China and for developing countries. Objective: This paper aims to sort out medical insurance informatization policies throughout the years, use questionnaires to determine the status quo of provincial MIIS-building in China and the relevant policies, provide references and suggestions for the top-level design and implementation of the information systems in the transitional period of China?s MIS reform, and provide a reference for the building of MIISs in developing countries. Methods: We conducted policy analysis by collecting the laws, regulations, and policy documents?issued from 1998 to 2020?on China's medical insurance and its informatization; we also analyzed the US Health Insurance Portability and Accountability Act and other relevant policies. We conducted a questionnaire survey by sending out questionnaires to 31 Chinese, provincial, medical security bureaus to collect information about network links, system functions, data exchange, standards and specifications, and building modes, among other items. We conducted a literature review by searching for documents about relevant laws and policies, building methods, application results, and other documents related to MIISs; we conducted searches using PubMed, Elsevier, China National Knowledge Infrastructure, and other major literature databases. We conducted telephone interviews to verify the results of questionnaires and to understand the focus issues concerning the building of China?s national MIISs during the period of integration and transition of China's MIS. Results: In 74% (23/31) of the regions in China, MIISs were networked through dedicated fiber optic lines. In 65% (20/31) of the regions in China, MIISs supported identity recognition based on both ID cards and social security cards. In 55% (17/31) of the regions in China, MIISs at provincial and municipal levels were networked and have gathered basic medical insurance data, whereas MIISs were connected to health insurance companies in 35% (11/31) of the regions in China. China?s MIISs are comprised of 11 basic functional modules, among which the modules of business operation, transregional referral, reimbursement, and monitoring systems are widely applied. MIISs in 83% (20/24) of Chinese provinces have stored data on coverage, payment, and settlement compensation of medical insurance. However, in terms of data security and privacy protection, pertinent policies are absent and data utilization is not in-depth enough. Respondents to telephone interviews universally reflected on the following issues and suggestions: in the period of integration and transition of MISs, close attention should be paid to the top-level design, and repeated investment should be avoided for the building of MIISs; MIISs should be adapted to the health care reform, and efforts should be made to strengthen the informatization support for the reform of payment methods; and MIISs should be adapted for the widespread application of mobile phones and should provide insured persons with more self-service functions. Conclusions: In the future, the building of China?s basic MIISs should be deployed at the national, provincial, prefectural, and municipal levels on a unified basis. Efforts should be made to strengthen the development of standard codes, data exchange, and data utilization. Work should be done to formulate the rules and regulations for security and privacy protection and to balance the right to be informed with the mining and utilization of big data. Efforts should be made to intensify the interconnectivity between MISs and other health systems and to strengthen the application of medical insurance information in public health monitoring and early warning systems; this would ultimately improve the degree of trust from stakeholders, including individuals, medical service providers, and public health institutions, in the basic MIISs. UR - https://medinform.jmir.org/2020/9/e18780 UR - http://dx.doi.org/10.2196/18780 UR - http://www.ncbi.nlm.nih.gov/pubmed/32673209 ID - info:doi/10.2196/18780 ER - TY - JOUR AU - Wang, Jingxuan AU - Huang, Junjie AU - Cheung, Kei Clement Shek AU - Wong, Nam Wing AU - Cheung, Tseung Ngai AU - Wong, CS Martin PY - 2020/4/6 TI - Adoption of an Electronic Patient Record Sharing Pilot Project: Cross-Sectional Survey JO - J Med Internet Res SP - e13761 VL - 22 IS - 4 KW - health information exchange KW - shared electronic health record KW - online platform KW - public-private partnership N2 - Background: The Public Private Interface?Electronic Patient Record (PPI-ePR) system was implemented as a new electronic platform to facilitate collaboration between the public and private sectors in Hong Kong. However, its barriers to participate and benefits have not been comprehensively assessed. Objective: This study aimed to evaluate the awareness, acceptance, perceived benefits, and obstacles to participation among private doctors and the general public. Methods: From December 2012 to January 2013, 2435 telephone interviews were performed by trained interviewers to survey randomly selected patients who were enrolled or not enrolled in the PPI-ePR system. In addition, self-administered surveys were sent by postal mail to 4229 registered doctors in Hong Kong. The questionnaires for both patients and doctors contained questions on subjects? awareness, acceptance, and perceptions of the PPI-ePR, perceived benefits and obstacles of participating in the program, reasons for not using the system after enrolling, and perceived areas for service improvement of the system. Results: More than 53.1% (266/501) of enrolled patients believed that the PPI-ePR system would improve health care quality by reducing duplicate tests and treatments, while more than 76.8% (314/409) of enrolled doctors emphasized timely access to patients? medical records as the biggest benefit of their enrollment. Among nonenrolled patients, unawareness of the project was the most popular obstacle to enrolling in the PPI-ePR system (483/1200, 40.3%). Regarding nonenrolled doctors, the complicated registration process hindered them from participating in the program the most (95/198, 48.0%). Television, newspaper, and magazine advertisements and medical profession newsletters or journals were suggested as the most effective means to encourage participation in the program among surveyed patients (1297/1701, 76.2%) and doctors (428/610, 70.2%), respectively. Lack of clinical indication requiring data extraction from other hospitals was the main reason for low level of PPI-ePR use. Conclusions: This study comprehensively assessed the popularity, perceived benefits, and hindering factors of enrolling in the PPI-ePR system in Hong Kong. Low levels of awareness, few privacy concerns, and inactive use of the PPI-ePR system were among the key features for patients and physicians. Public promotions, simplified logistics, and a user-friendly online interface were suggested to improve the coverage and effectiveness of health information exchange between private and public health care sectors. UR - https://www.jmir.org/2020/4/e13761 UR - http://dx.doi.org/10.2196/13761 UR - http://www.ncbi.nlm.nih.gov/pubmed/32250279 ID - info:doi/10.2196/13761 ER - TY - JOUR AU - Esmaeilzadeh, Pouyan PY - 2019/11/26 TI - The Impacts of the Perceived Transparency of Privacy Policies and Trust in Providers for Building Trust in Health Information Exchange: Empirical Study JO - JMIR Med Inform SP - e14050 VL - 7 IS - 4 KW - cognitive trust in competence KW - cognitive trust in integrity KW - emotional trust KW - perceived transparency of privacy policy KW - trust in health care providers N2 - Background: In the context of exchange technologies, such as health information exchange (HIE), existing technology acceptance theories should be expanded to consider not only the cognitive beliefs resulting in adoption behavior but also the affect provoked by the sharing nature of the technology. Objective: We aimed to study HIE adoption using a trust-centered model. Based on the Theory of Reasoned Action, the technology adoption literature, and the trust transfer mechanism, we theoretically explained and empirically tested the impacts of the perceived transparency of privacy policy and trust in health care providers on cognitive and emotional trust in an HIE. Moreover, we analyzed the effects of cognitive and emotional trust on the intention to opt in to the HIE and willingness to disclose health information. Methods: A Web-based survey was conducted using data from a sample of 493 individuals who were aware of the HIE through experiences with a (or multiple) provider(s) participating in an HIE network. Results: Structural Equation Modeling analysis results provided empirical support for the proposed model. Our findings indicated that when patients trust in health care providers, and they are aware of HIE security measures, HIE sharing procedures, and privacy terms, they feel more in control, more assured, and less at risk. Moreover, trust in providers has a significant moderating effect on building trust in HIE efforts (P<.05). Results also showed that patient trust in HIE may take the forms of opt-in intentions to HIE and patients? willingness to disclose health information that are exchanged through the HIE (P<.001). Conclusions: The results of this research should be of interest to both academics and practitioners. The findings provide an in-depth dimension of the HIE privacy policy that should be addressed by the health care organizations to exchange personal health information in a secure and private manner. This study can contribute to trust transfer theory and enrich the literature on HIE efforts. Primary and secondary care providers can also identify how to leverage the benefit of patients? trust and trust transfer process to promote HIE initiatives nationwide. UR - http://medinform.jmir.org/2019/4/e14050/ UR - http://dx.doi.org/10.2196/14050 UR - http://www.ncbi.nlm.nih.gov/pubmed/31769757 ID - info:doi/10.2196/14050 ER - TY - JOUR AU - Shen, Nelson AU - Sequeira, Lydia AU - Silver, Pannor Michelle AU - Carter-Langford, Abigail AU - Strauss, John AU - Wiljer, David PY - 2019/11/13 TI - Patient Privacy Perspectives on Health Information Exchange in a Mental Health Context: Qualitative Study JO - JMIR Ment Health SP - e13306 VL - 6 IS - 11 KW - privacy KW - health information exchange KW - health information technology KW - attitude to health KW - trust N2 - Background: The privacy of patients with mental health conditions is prominent in health information exchange (HIE) discussions, given that their potentially sensitive personal health information (PHI) may be electronically shared for various health care purposes. Currently, the patient privacy perspective in the mental health context is not well understood because of the paucity of in-depth patient privacy research; however, the evidence suggests that patient privacy perspectives are more nuanced than what has been assumed in the academic and health care community. Objective: This study aimed to generate an understanding on how patients with mental health conditions feel about privacy in the context of HIE in Canada. This study also sought to identify the factors underpinning their privacy perspectives and explored how their perspectives influenced their attitudes toward HIE. Methods: Semistructured interviews were conducted with patients at a Canadian academic hospital for addictions and mental health. Guided by the Antecedent-Privacy Concern-Outcome macro-model, interview transcripts underwent deductive and inductive thematic analyses. Results: We interviewed 14 participants. Their privacy concerns varied, depending on the participant?s privacy experiences and health care perceptions. Media reports of privacy breaches and hackers had little impact on participants? privacy concerns because of a fatalistic belief that privacy breaches are a reality in the digital age. Rather, direct observations and experiences with the mistreatment of PHI in health care settings caused concern. Decisions to trust others with PHI depended on past experiences with the individual (or institution) and health care needs. Participants had little knowledge of patient privacy rights and legislation but were willing to participate in HIE because of perceived individual and societal benefits. Conclusions: This study introduces evidence that patients with mental health conditions would support HIE. Participants were pragmatic, supporting HIE because they wanted the best care possible. They also understood that their PHI was critical in supporting the single-payer Canadian health care system. Participant health care experiences informed their privacy perspectives, trust, and PHI sharing attitudes?all accentuating the importance of the patient experience in building trust in HIE. Their lack of knowledge about patient rights and PHI uses highlights the degree of trust they have in the health care system to protect their privacy. These findings suggest that the patient privacy discourse should extend beyond the oft-cited barrier of patient privacy concerns to include discussions about building trust, communicating the benefits of HIE, and improving patient experiences. Although our findings are in the Canadian context, this study highlights the importance of engaging patients in privacy policy discussions, regardless of jurisdiction, to ensure their nuanced perspectives are reflected in policy decisions on their PHI. UR - https://mental.jmir.org/2019/11/e13306 UR - http://dx.doi.org/10.2196/13306 UR - http://www.ncbi.nlm.nih.gov/pubmed/31719029 ID - info:doi/10.2196/13306 ER - TY - JOUR AU - Pendergrass, C. John AU - Chandrasekaran, Ranganathan PY - 2019/11/7 TI - Key Factors Affecting Ambulatory Care Providers? Electronic Exchange of Health Information With Affiliated and Unaffiliated Partners: Web-Based Survey Study JO - JMIR Med Inform SP - e12000 VL - 7 IS - 4 KW - health information exchange KW - ambulatory care information systems KW - ambulatory care facilities N2 - Background: Despite the potential benefits of electronic health information exchange (HIE) to improve the quality and efficiency of care, HIE use by ambulatory providers remains low. Ambulatory providers can greatly improve the quality of care by electronically exchanging health information with affiliated providers within their health care network as well as with unaffiliated, external providers. Objective: This study aimed to examine the extent of electronic HIE use by ambulatory clinics with affiliated providers within their health system and with external providers, as well as the key technological, organizational, and environmental factors affecting the extent of HIE use within and outside the health system. Methods: A Web-based survey of 320 ambulatory care providers was conducted in the state of Illinois. The study examined the extent of HIE usage by ambulatory providers with hospitals, clinics, and other facilities within and outside their health care system?encompassing seven kinds of health care data. Ten factors pertaining to technology (IT [information technology] Compatibility, External IT Support, Security & Privacy Safeguards), organization (Workflow Adaptability, Senior Leadership Support, Clinicians Health-IT Knowledge, Staff Health-IT Knowledge), and environment (Government Efforts & Incentives, Partner Readiness, Competitors and Peers) were assessed. A series of multivariate regressions were used to examine predictor effects. Results: The 6 regressions produced adjusted R-squared values ranging from 0.44 to 0.63. We found that ambulatory clinics exchanged more health information electronically with affiliated entities within their health system as compared with those outside their health system. Partner readiness emerged as the most significant predictor of HIE usage with all entities. Governmental initiatives for HIE, clinicians? prior familiarity and knowledge of health IT systems, implementation of appropriate security, and privacy safeguards were also significant predictors. External information technology support and workflow adaptability emerged as key predictors for HIE use outside a clinic?s health system. Differences based on clinic size, ownership, and specialty were also observed. Conclusions: This study provides exploratory insights into HIE use by ambulatory providers within and outside their health care system and differential predictors that impact HIE use. HIE use can be further improved by encouraging large-scale interoperability efforts, improving external IT support, and redesigning adaptable workflows. UR - http://medinform.jmir.org/2019/4/e12000/ UR - http://dx.doi.org/10.2196/12000 UR - http://www.ncbi.nlm.nih.gov/pubmed/31697241 ID - info:doi/10.2196/12000 ER - TY - JOUR AU - Esmaeilzadeh, Pouyan AU - Mirzaei, Tala PY - 2019/06/20 TI - The Potential of Blockchain Technology for Health Information Exchange: Experimental Study From Patients? Perspectives JO - J Med Internet Res SP - e14184 VL - 21 IS - 6 KW - health information exchange KW - patients KW - privacy KW - trust KW - risk KW - perception N2 - Background: Nowadays, a number of mechanisms and tools are being used by health care organizations and physicians to electronically exchange the personal health information of patients. The main objectives of different methods of health information exchange (HIE) are to reduce health care costs, minimize medical errors, and improve the coordination of interorganizational information exchange across health care entities. The main challenges associated with the common HIE systems are privacy concerns, security risks, low visibility of system transparency, and lack of patient control. Blockchain technology is likely to disrupt the current information exchange models utilized in the health care industry. Objective: Little is known about patients? perceptions and attitudes toward the implementation of blockchain-enabled HIE networks, and it is still not clear if patients (as one of the main HIE stakeholders) are likely to opt in to the applications of this technology in HIE initiatives. Thus, this study aimed at exploring the core value of blockchain technology in the health care industry from health care consumers? views. Methods: To recognize the potential applications of blockchain technology in health care practices, we designed 16 information exchange scenarios for controlled Web-based experiments. Overall, 2013 respondents participated in 16 Web-based experiments. Each experiment described an information exchange condition characterized by 4 exchange mechanisms (ie, direct, lookup, patient-centered, and blockchain), 2 types of health information (ie, sensitive vs nonsensitive), and 2 types of privacy policy (weak vs strong). Results: The findings show that there are significant differences in patients? perceptions of various exchange mechanisms with regard to patient privacy concern, trust in competency and integrity, opt-in intention, and willingness to share information. Interestingly, participants hold a favorable attitude toward the implementation of blockchain-based exchange mechanisms for privacy protection, coordination, and information exchange purposes. This study proposed the potentials and limitations of a blockchain-based attempt in the HIE context. Conclusions: The results of this research should be of interest to both academics and practitioners. The findings propose potential limitations of a blockchain-based HIE that should be addressed by health care organizations to exchange personal health information in a secure and private manner. This study can contribute to the research in the blockchain area and enrich the literature on the use of blockchain in HIE efforts. Practitioners can also identify how to leverage the benefit of blockchain to promote HIE initiatives nationwide. UR - http://www.jmir.org/2019/6/e14184/ UR - http://dx.doi.org/10.2196/14184 UR - http://www.ncbi.nlm.nih.gov/pubmed/31223119 ID - info:doi/10.2196/14184 ER - TY - JOUR AU - Hawig, David AU - Zhou, Chao AU - Fuhrhop, Sebastian AU - Fialho, S. Andre AU - Ramachandran, Navin PY - 2019/6/14 TI - Designing a Distributed Ledger Technology System for Interoperable and General Data Protection Regulation?Compliant Health Data Exchange: A Use Case in Blood Glucose Data JO - J Med Internet Res SP - e13665 VL - 21 IS - 6 KW - distributed ledger technology KW - directed acyclic graph KW - IOTA KW - IPFS KW - blockchain KW - Masked Authenticated Messaging, MAM KW - mobile health KW - blood glucose KW - diabetes KW - FHIR N2 - Background: Distributed ledger technology (DLT) holds great potential to improve health information exchange. However, the immutable and transparent character of this technology may conflict with data privacy regulations and data processing best practices. Objective: The aim of this paper is to develop a proof-of-concept system for immutable, interoperable, and General Data Protection Regulation (GDPR)?compliant exchange of blood glucose data. Methods: Given that there is no ideal design for a DLT-based patient-provider data exchange solution, we proposed two different variations for our proof-of-concept system. One design was based purely on the public IOTA distributed ledger (a directed acyclic graph-based DLT) and the second used the same public IOTA ledger in combination with a private InterPlanetary File System (IPFS) cluster. Both designs were assessed according to (1) data reversal risk, (2) data linkability risks, (3) processing time, (4) file size compatibility, and (5) overall system complexity. Results: The public IOTA design slightly increased the risk of personal data linkability, had an overall low processing time (requiring mean 6.1, SD 1.9 seconds to upload one blood glucose data sample into the DLT), and was relatively simple to implement. The combination of the public IOTA with a private IPFS cluster minimized both reversal and linkability risks, allowed for the exchange of large files (3 months of blood glucose data were uploaded into the DLT in mean 38.1, SD 13.4 seconds), but involved a relatively higher setup complexity. Conclusions: For the specific use case of blood glucose explored in this study, both designs presented a suitable performance in enabling the interoperable exchange of data between patients and providers. Additionally, both systems were designed considering the latest guidelines on personal data processing, thereby maximizing the alignment with recent GDPR requirements. For future works, these results suggest that the conflict between DLT and data privacy regulations can be addressed if careful considerations are made regarding the use case and the design of the data exchange system. UR - http://www.jmir.org/2019/6/e13665/ UR - http://dx.doi.org/10.2196/13665 UR - http://www.ncbi.nlm.nih.gov/pubmed/31199293 ID - info:doi/10.2196/13665 ER - TY - JOUR AU - Dobrow, J. Mark AU - Bytautas, P. Jessica AU - Tharmalingam, Sukirtha AU - Hagens, Simon PY - 2019/06/06 TI - Interoperable Electronic Health Records and Health Information Exchanges: Systematic Review JO - JMIR Med Inform SP - e12607 VL - 7 IS - 2 KW - health information exchange KW - electronic health record KW - interoperability KW - use KW - impact KW - systematic review N2 - Background: As the availability of interoperable electronic health records (iEHRs) or health information exchanges (HIEs) continues to increase, there is greater need and opportunity to assess the current evidence base on what works and what does not regarding the adoption, use, and impact of iEHRs. Objective: The purpose of this project is to assess the international evidence base on the adoption, use, and impact of iEHRs. Methods: We conducted a systematic review, searching multiple databases?MEDLINE, Embase, and the Cumulative Index to Nursing and Allied Health Literature (CINAHL)?with supplemental searches conducted in Google Scholar and grey literature sources (ie, Google, Grey Literature Report, and OpenGrey). All searches were conducted in January and February 2017. Articles were eligible for inclusion if they were published in English, were published from 2006 to 2017, and were either an original research study or a literature review. In order to be included, articles needed to focus on iEHRs and HIEs across multiple health care settings, as well as on the impact and effectiveness of iEHR adoption and use. Results: We included 130 articles in the synthesis (113 primary studies, 86.9%; 17 reviews, 13.1%), with the majority focused on the United States (88/130, 67.7%). The primary studies focused on a wide range of health care settings; the three most prevalent settings studied included acute care (59/113, 52.2%), primary care (44/113, 38.9%), and emergency departments (34/113, 30.1%). We identified 29 distinct measurement items in the 113 primary studies that were linked to 522 specific measurement outcomes. Productivity and quality were the two evaluation dimensions that received the most attention, accounting for 14 of 29 (48%) measurement items and 306 of 522 (58.6%) measurement outcomes identified. Overall, the majority of the 522 measurement outcomes were positive (298/522, 57.1%). We also identified 17 reviews on iEHR use and impact, 6 (35%) that focused on barriers and facilitators to adoption and implementation and 11 (65%) that focused on benefits and impacts, with the more recent reviews finding little generalizable evidence of benefit and impact. Conclusions: This review captures the status of an evolving and active field focused on the use and impact of iEHRs. While the overall findings suggest many positive impacts, the quality of the primary studies were not evaluated systematically. When broken down by specific measurement item, the results directed attention both to measurement outcomes that were consistently positive and others that were mostly negative or equivocal. UR - http://medinform.jmir.org/2019/2/e12607/ UR - http://dx.doi.org/10.2196/12607 UR - http://www.ncbi.nlm.nih.gov/pubmed/31172961 ID - info:doi/10.2196/12607 ER - TY - JOUR AU - Duftschmid, Georg AU - Rinner, Christoph AU - Sauter, Katja Simone AU - Endel, Gottfried AU - Klimek, Peter AU - Mitsch, Christoph AU - Heinzl, Harald PY - 2019/04/12 TI - Patient-Sharing Relations in the Treatment of Diabetes and Their Implications for Health Information Exchange: Claims-Based Analysis JO - JMIR Med Inform SP - e12172 VL - 7 IS - 2 KW - health information exchange KW - professional-patient relations KW - diabetes mellitus KW - Austria N2 - Background: Health information exchange (HIE) among care providers who cooperate in the treatment of patients with diabetes mellitus (DM) has been rated as an important aspect of successful care. Patient-sharing relations among care providers permit inferences about corresponding information-sharing relations. Objectives: This study aimed to obtain information for an effective HIE platform design to be used in DM care by analyzing patient-sharing relations among various types of care providers (ToCPs), such as hospitals, pharmacies, and different outpatient specialists, within a nationwide claims dataset of Austrian DM patients. We focus on 2 parameters derived from patient-sharing networks: (1) the principal HIE partners of the different ToCPs involved in the treatment of DM and (2) the required participation rate of ToCPs in HIE platforms for the purpose of effective communication. Methods: The claims data of 7.9 million Austrian patients from 2006 to 2007 served as our data source. DM patients were identified by their medication. We established metrics for the quantification of our 2 parameters of interest. The principal HIE partners were derived from the portions of a care provider?s patient-sharing relations with different ToCPs. For the required participation rate of ToCPs in an HIE platform, we determine the concentration of patient-sharing relations among ToCPs. Our corresponding metrics are derived in analogy from existing work for the quantification of the continuity of care. Results: We identified 324,703 DM patients treated by 12,226 care providers; the latter were members of 16 ToCPs. On the basis of their score for 2 of our parameters, we categorized the ToCPs into low, medium, and high. For the most important HIE partner parameter, pharmacies, general practitioners (GPs), and laboratories were the representatives of the top group, that is, our care providers shared the highest numbers of DM patients with these ToCPs. For the required participation rate of type of care provide (ToCP) in HIE platform parameter, the concentration of DM patient-sharing relations with a ToCP tended to be inversely related to the ToCPs member count. Conclusions: We conclude that GPs, pharmacies, and laboratories should be core members of any HIE platform that supports DM care, as they are the most important DM patient-sharing partners. We further conclude that, for implementing HIE with ToCPs who have many members (in Austria, particularly GPs and pharmacies), an HIE solution with high participation rates from these ToCPs (ideally a nationwide HIE platform with obligatory participation of the concerned ToCPs) seems essential. This will raise the probability of HIE being achieved with any care provider of these ToCPs. As chronic diseases are rising because of aging societies, we believe that our quantification of HIE requirements in the treatment of DM can provide valuable insights for many industrial countries. UR - http://medinform.jmir.org/2019/2/e12172/ UR - http://dx.doi.org/10.2196/12172 UR - http://www.ncbi.nlm.nih.gov/pubmed/30977733 ID - info:doi/10.2196/12172 ER - TY - JOUR AU - Wen, Hsyien-Chia AU - Chang, Wei-Pin AU - Hsu, Min-Huei AU - Ho, Cheng-Hsun AU - Chu, Chi-Ming PY - 2019/03/28 TI - An Assessment of the Interoperability of Electronic Health Record Exchanges Among Hospitals and Clinics in Taiwan JO - JMIR Med Inform SP - e12630 VL - 7 IS - 1 KW - electronic health records KW - interoperability KW - data exchange KW - hospitals KW - clinics N2 - Background: The rapid aging of the Taiwanese population in recent years has led to high medical needs for the elderly and increasing medical costs. Integrating patient information through electronic health records (EHRs) to reduce unnecessary medications and tests and enhance the quality of care has currently become an important issue. Although electronic data interchanges among hospitals and clinics have been implemented for many years in Taiwan, the interoperability of EHRs has not adequately been assessed. Objective: The study aimed to analyze the efficiency of data exchanges and provide suggestions for future improvements. Methods: We obtained 30 months of uploaded and downloaded data of EHRs among hospitals and clinics. The research objects of this study comprised 19 medical centers, 57 regional hospitals, 95 district hospitals, and 5520 clinics. We examined 4 exchange EHR forms: laboratory test reports, medical images, discharge summaries, and outpatient medical records. We used MySQL (Oracle Corporation) software (to save our data) and phpMyAdmin, which is a Personal Home Page program, to manage the database and then analyzed the data using SPSS 19.0 statistical software. Results: The quarterly mean uploaded volume of EHRs among hospitals was 52,790,721 (SD 580,643). The quarterly mean downloaded volume of EHRs among hospitals and clinics was 650,323 (SD 215,099). The ratio of uploaded to downloaded EHRs was about 81:1. The total volume of EHRs was mainly downloaded by medical centers and clinics, which accounted for 53.82% (mean 318,717.80) and 45.41% (mean 269,082.10), respectively, and the statistical test was significant among different hospital accreditation levels (F2=7.63; P<.001). A comparison of EHR download volumes among the 6 National Health Insurance (NHI) branches showed that the central NHI branch downloaded 11,366,431 records (21.53%), which was the highest, and the eastern branch downloaded 1,615,391 records (3.06%), which was the lowest. The statistical test among the 6 NHI branches was significant (F5=8.82; P<.001). The download volumes of laboratory tests reports and outpatient medical records were 26,980,425 (50.3%) and 21,747,588 records (40.9%), respectively, and were much higher than medical images and discharge summaries. The statistical test was also significant (F=17.72; P<.001). Finally, the download time showed that the average for x-rays was 32.05 seconds, which was the longest, and was 9.92 seconds for electrocardiogram, which was the shortest, but there was no statistically significant difference among download times for various medical images. Conclusions: After years of operation, the Electronic Medical Record Exchange Center has achieved the initial goal of EHR interoperability, and data exchanges are running quite stably in Taiwan. However, the meaningful use of EHRs among hospitals and clinics still needs further encouragement and promotion. We suggest that the government?s leading role and collective collaboration with health care organizations are important for providing effective health information exchanges. UR - http://medinform.jmir.org/2019/1/e12630/ UR - http://dx.doi.org/10.2196/12630 UR - http://www.ncbi.nlm.nih.gov/pubmed/30920376 ID - info:doi/10.2196/12630 ER - TY - JOUR AU - Luo, Gang AU - Tarczy-Hornoch, Peter AU - Wilcox, B. Adam AU - Lee, Sally E. PY - 2018/11/05 TI - Identifying Patients Who Are Likely to Receive Most of Their Care From a Specific Health Care System: Demonstration via Secondary Analysis JO - JMIR Med Inform SP - e12241 VL - 6 IS - 4 KW - data analysis KW - inpatients KW - emergency departments KW - health care system N2 - Background: In the United States, health care is fragmented in numerous distinct health care systems including private, public, and federal organizations like private physician groups and academic medical centers. Many patients have their complete medical data scattered across these several health care systems, with no particular system having complete data on any of them. Several major data analysis tasks such as predictive modeling using historical data are considered impractical on incomplete data. Objective: Our objective was to find a way to enable these analysis tasks for a health care system with incomplete data on many of its patients. Methods: This study presents, to the best of our knowledge, the first method to use a geographic constraint to identify a reasonably large subset of patients who tend to receive most of their care from a given health care system. A data analysis task needing relatively complete data can be conducted on this subset of patients. We demonstrated our method using data from the University of Washington Medicine (UWM) and PreManage data covering the use of all hospitals in Washington State. We compared 10 candidate constraints to optimize the solution. Results: For UWM, the best constraint is that the patient has a UWM primary care physician and lives within 5 miles of at least one UWM hospital. About 16.01% (55,707/348,054) of UWM patients satisfied this constraint. Around 69.38% (10,501/15,135) of their inpatient stays and emergency department visits occurred within UWM in the following 6 months, more than double the corresponding percentage for all UWM patients. Conclusions: Our method can identify a reasonably large subset of patients who tend to receive most of their care from UWM. This enables several major analysis tasks on incomplete medical data that were previously deemed infeasible. UR - http://medinform.jmir.org/2018/4/e12241/ UR - http://dx.doi.org/10.2196/12241 UR - http://www.ncbi.nlm.nih.gov/pubmed/30401670 ID - info:doi/10.2196/12241 ER - TY - JOUR AU - Graham, AD Timothy AU - Ballermann, Mark AU - Lang, Eddy AU - Bullard, J. Michael AU - Parsons, Denise AU - Mercuur, Gabriella AU - San Agustin, Pat AU - Ali, Samina PY - 2018/9/25 TI - Emergency Physician Use of the Alberta Netcare Portal, a Province-Wide Interoperable Electronic Health Record: Multi-Method Observational Study JO - JMIR Med Inform SP - e10184 VL - 6 IS - 3 KW - ambulatory care facilities KW - cross-sectional studies KW - electronic health records KW - utilization KW - hospital emergency service KW - statistics and numerical data KW - health information exchange KW - humans KW - information dissemination KW - medical record linkage KW - program evaluation N2 - Background: The adoption and use of an electronic health record (EHR) can facilitate real-time access to key health information and support improved outcomes. Many Canadian provinces use interoperable EHRs (iEHRs) to facilitate health information exchange, but the clinical use and utility of iEHRs has not been well described. Objective: The aim of this study was to describe the use of a provincial iEHR known as the Alberta Netcare Portal (ANP) in 4 urban Alberta emergency departments. The secondary objectives were to characterize the time spent using the respective electronic tools and identify the aspects that were perceived as most useful by emergency department physicians. Methods: In this study, we have included 4 emergency departments, 2 using paper-based ordering (University of Alberta Hospital [UAH] and Grey Nuns Community Hospital [GNCH]) and 2 using a commercial vendor clinical information system (Peter Lougheed Centre [PLC] and Foothills Medical Centre [FMC]). Structured clinical observations of ANP use and system audit logs analysis were compared at the 4 sites from October 2014 to March 2016. Results: Observers followed 142 physicians for a total of 566 hours over 376 occasions. The median percentage of observed time spent using ANP was 8.5% at UAH (interquartile range, IQR, 3.7%-13.3%), 4.4% at GNCH (IQR 2.4%-4.4%), 4.6% at FMC (IQR 2.4%-7.6%), and 5.1% at PLC (IQR 3.0%-7.7%). By combining administrative and access audit data, the median number of ANP screens (ie, results and reports displayed on a screen) accessed per patient visit were 20 at UAH (IQR 6-67), 9 at GNCH (IQR 4-29), 7 at FMC (IQR 2-18), and 5 at PLC (IQR 2-14). When compared with the structured clinical observations, the statistical analysis of screen access data showed that ANP was used more at UAH than the other sites. Conclusions: This study shows that the iEHR is well utilized at the 4 sites studied, and the usage patterns implied clinical value. Use of the ANP was highest in a paper-based academic center and lower in the centers using a commercial emergency department clinical information system. More study about the clinical impacts of using iEHRs in the Canadian context including longer term impacts on quality of practice and safety are required. UR - http://medinform.jmir.org/2018/3/e10184/ UR - http://dx.doi.org/10.2196/10184 UR - http://www.ncbi.nlm.nih.gov/pubmed/30274967 ID - info:doi/10.2196/10184 ER - TY - JOUR AU - Balsari, Satchit AU - Fortenko, Alexander AU - Blaya, A. Joaquín AU - Gropper, Adrian AU - Jayaram, Malavika AU - Matthan, Rahul AU - Sahasranam, Ram AU - Shankar, Mark AU - Sarbadhikari, N. Suptendra AU - Bierer, E. Barbara AU - Mandl, D. Kenneth AU - Mehendale, Sanjay AU - Khanna, Tarun PY - 2018/07/13 TI - Reimagining Health Data Exchange: An Application Programming Interface?Enabled Roadmap for India JO - J Med Internet Res SP - e10725 VL - 20 IS - 7 KW - health information exchange KW - India KW - health APIs UR - http://www.jmir.org/2018/7/e10725/ UR - http://dx.doi.org/10.2196/10725 UR - http://www.ncbi.nlm.nih.gov/pubmed/30006325 ID - info:doi/10.2196/10725 ER - TY - JOUR AU - Feldman, S. Sue PY - 2018/04/30 TI - An Early Model for Value and Sustainability in Health Information Exchanges: Qualitative Study JO - JMIR Med Inform SP - e29 VL - 6 IS - 2 KW - health information exchange KW - medical informatics KW - information systems KW - value proposition KW - health informatics N2 - Background: The primary value relative to health information exchange has been seen in terms of cost savings relative to laboratory and radiology testing, emergency department expenditures, and admissions. However, models are needed to statistically quantify value and sustainability and better understand the dependent and mediating factors that contribute to value and sustainability. Objective: The purpose of this study was to provide a basis for early model development for health information exchange value and sustainability. Methods: A qualitative study was conducted with 21 interviews of eHealth Exchange participants across 10 organizations. Using a grounded theory approach and 3.0 as a relative frequency threshold, 5 main categories and 16 subcategories emerged. Results: This study identifies 3 core current perceived value factors and 5 potential perceived value factors?how interviewees predict health information exchanges may evolve as there are more participants. These value factors were used as the foundation for early model development for sustainability of health information exchange. Conclusions: Using the value factors from the interviews, the study provides the basis for early model development for health information exchange value and sustainability. This basis includes factors from the research: fostering consumer engagement; establishing a provider directory; quantifying use, cost, and clinical outcomes; ensuring data integrity through patient matching; and increasing awareness, usefulness, interoperability, and sustainability of eHealth Exchange. UR - http://medinform.jmir.org/2018/2/e29/ UR - http://dx.doi.org/10.2196/medinform.9299 UR - http://www.ncbi.nlm.nih.gov/pubmed/29712623 ID - info:doi/10.2196/medinform.9299 ER - TY - JOUR AU - Beitia, Oscar Anton AU - Lowry, Tina AU - Vreeman, J. Daniel AU - Loo, T. George AU - Delman, N. Bradley AU - Thum, L. Frederick AU - Slovis, H. Benjamin AU - Shapiro, S. Jason PY - 2017/12/14 TI - Standard Anatomic Terminologies: Comparison for Use in a Health Information Exchange?Based Prior Computed Tomography (CT) Alerting System JO - JMIR Med Inform SP - e49 VL - 5 IS - 4 KW - tomography, x-ray computed KW - health information exchange KW - radiation dosage KW - terminology KW - anatomy, regional N2 - Background: A health information exchange (HIE)?based prior computed tomography (CT) alerting system may reduce avoidable CT imaging by notifying ordering clinicians of prior relevant studies when a study is ordered. For maximal effectiveness, a system would alert not only for prior same CTs (exams mapped to the same code from an exam name terminology) but also for similar CTs (exams mapped to different exam name terminology codes but in the same anatomic region) and anatomically proximate CTs (exams in adjacent anatomic regions). Notification of previous same studies across an HIE requires mapping of local site CT codes to a standard terminology for exam names (such as Logical Observation Identifiers Names and Codes [LOINC]) to show that two studies with different local codes and descriptions are equivalent. Notifying of prior similar or proximate CTs requires an additional mapping of exam codes to anatomic regions, ideally coded by an anatomic terminology. Several anatomic terminologies exist, but no prior studies have evaluated how well they would support an alerting use case. Objective: The aim of this study was to evaluate the fitness of five existing standard anatomic terminologies to support similar or proximate alerts of an HIE-based prior CT alerting system. Methods: We compared five standard anatomic terminologies (Foundational Model of Anatomy, Systematized Nomenclature of Medicine Clinical Terms, RadLex, LOINC, and LOINC/Radiological Society of North America [RSNA] Radiology Playbook) to an anatomic framework created specifically for our use case (Simple ANatomic Ontology for Proximity or Similarity [SANOPS]), to determine whether the existing terminologies could support our use case without modification. On the basis of an assessment of optimal terminology features for our purpose, we developed an ordinal anatomic terminology utility classification. We mapped samples of 100 random and the 100 most frequent LOINC CT codes to anatomic regions in each terminology, assigned utility classes for each mapping, and statistically compared each terminology?s utility class rankings. We also constructed seven hypothetical alerting scenarios to illustrate the terminologies? differences. Results: Both RadLex and the LOINC/RSNA Radiology Playbook anatomic terminologies ranked significantly better (P<.001) than the other standard terminologies for the 100 most frequent CTs, but no terminology ranked significantly better than any other for 100 random CTs. Hypothetical scenarios illustrated instances where no standard terminology would support appropriate proximate or similar alerts, without modification. Conclusions: LOINC/RSNA Radiology Playbook and RadLex?s anatomic terminologies appear well suited to support proximate or similar alerts for commonly ordered CTs, but for less commonly ordered tests, modification of the existing terminologies with concepts and relations from SANOPS would likely be required. Our findings suggest SANOPS may serve as a framework for enhancing anatomic terminologies in support of other similar use cases. UR - http://medinform.jmir.org/2017/4/e49/ UR - http://dx.doi.org/10.2196/medinform.8765 UR - http://www.ncbi.nlm.nih.gov/pubmed/29242174 ID - info:doi/10.2196/medinform.8765 ER - TY - JOUR AU - Hersh, R. William AU - Totten, M. Annette AU - Eden, B. Karen AU - Devine, Beth AU - Gorman, Paul AU - Kassakian, Z. Steven AU - Woods, S. Susan AU - Daeges, Monica AU - Pappas, Miranda AU - McDonagh, S. Marian PY - 2015/12/15 TI - Outcomes From Health Information Exchange: Systematic Review and Future Research Needs JO - JMIR Med Inform SP - e39 VL - 3 IS - 4 KW - diagnostic tests KW - health information exchange KW - outcome assessment (health care) KW - patient readmission KW - routine KW - systematic review N2 - Background: Health information exchange (HIE), the electronic sharing of clinical information across the boundaries of health care organizations, has been promoted to improve the efficiency, cost-effectiveness, quality, and safety of health care delivery. Objective: To systematically review the available research on HIE outcomes and analyze future research needs. Methods: Data sources included citations from selected databases from January 1990 to February 2015. We included English-language studies of HIE in clinical or public health settings in any country. Data were extracted using dual review with adjudication of disagreements. Results: We identified 34 studies on outcomes of HIE. No studies reported on clinical outcomes (eg, mortality and morbidity) or identified harms. Low-quality evidence generally finds that HIE reduces duplicative laboratory and radiology testing, emergency department costs, hospital admissions (less so for readmissions), and improves public health reporting, ambulatory quality of care, and disability claims processing. Most clinicians attributed positive changes in care coordination, communication, and knowledge about patients to HIE. Conclusions: Although the evidence supports benefits of HIE in reducing the use of specific resources and improving the quality of care, the full impact of HIE on clinical outcomes and potential harms are inadequately studied. Future studies must address comprehensive questions, use more rigorous designs, and employ a standard for describing types of HIE. Trial Registration: PROSPERO Registry No CRD42014013285; http://www.crd.york.ac.uk/PROSPERO/ display_record.asp?ID=CRD42014013285 (Archived by WebCite at http://www.webcitation.org/6dZhqDM8t). UR - http://medinform.jmir.org/2015/4/e39/ UR - http://dx.doi.org/10.2196/medinform.5215 UR - http://www.ncbi.nlm.nih.gov/pubmed/26678413 ID - info:doi/10.2196/medinform.5215 ER - TY - JOUR AU - Hu, Zhongkai AU - Hao, Shiying AU - Jin, Bo AU - Shin, Young Andrew AU - Zhu, Chunqing AU - Huang, Min AU - Wang, Yue AU - Zheng, Le AU - Dai, Dorothy AU - Culver, S. Devore AU - Alfreds, T. Shaun AU - Rogow, Todd AU - Stearns, Frank AU - Sylvester, G. Karl AU - Widen, Eric AU - Ling, Xuefeng PY - 2015/09/22 TI - Online Prediction of Health Care Utilization in the Next Six Months Based on Electronic Health Record Information: A Cohort and Validation Study JO - J Med Internet Res SP - e219 VL - 17 IS - 9 KW - health care costs KW - electronic medical record KW - prospective studies KW - statistical data analysis KW - risk assessment N2 - Background: The increasing rate of health care expenditures in the United States has placed a significant burden on the nation?s economy. Predicting future health care utilization of patients can provide useful information to better understand and manage overall health care deliveries and clinical resource allocation. Objective: This study developed an electronic medical record (EMR)-based online risk model predictive of resource utilization for patients in Maine in the next 6 months across all payers, all diseases, and all demographic groups. Methods: In the HealthInfoNet, Maine?s health information exchange (HIE), a retrospective cohort of 1,273,114 patients was constructed with the preceding 12-month EMR. Each patient?s next 6-month (between January 1, 2013 and June 30, 2013) health care resource utilization was retrospectively scored ranging from 0 to 100 and a decision tree?based predictive model was developed. Our model was later integrated in the Maine HIE population exploration system to allow a prospective validation analysis of 1,358,153 patients by forecasting their next 6-month risk of resource utilization between July 1, 2013 and December 31, 2013. Results: Prospectively predicted risks, on either an individual level or a population (per 1000 patients) level, were consistent with the next 6-month resource utilization distributions and the clinical patterns at the population level. Results demonstrated the strong correlation between its care resource utilization and our risk scores, supporting the effectiveness of our model. With the online population risk monitoring enterprise dashboards, the effectiveness of the predictive algorithm has been validated by clinicians and caregivers in the State of Maine. Conclusions: The model and associated online applications were designed for tracking the evolving nature of total population risk, in a longitudinal manner, for health care resource utilization. It will enable more effective care management strategies driving improved patient outcomes. UR - http://www.jmir.org/2015/9/e219/ UR - http://dx.doi.org/10.2196/jmir.4976 UR - http://www.ncbi.nlm.nih.gov/pubmed/26395541 ID - info:doi/10.2196/jmir.4976 ER - TY - JOUR AU - Korosec, Lauren AU - Balenko, Krista AU - Hagens, Simon PY - 2015/01/08 TI - Impact of Information Technology on Information Gaps in Canadian Ambulatory Care Encounters JO - JMIR Med Inform SP - e1 VL - 3 IS - 1 KW - digital health KW - information gaps KW - ambulatory KW - outpatient N2 - Background: Specialist physicians require clinical information for patient visits in ambulatory encounters, some of which they may access via digital health solutions. Objective: This study explored the completeness of information for patient care and the consequences of gaps for ambulatory specialist services provided in ambulatory settings in Canada. Methods: A sample of specialist physicians practising in outpatient clinics was recruited from a health care provider research panel. The study (n=1800 patient encounters) looked at the completeness of patient information experienced by physicians who work in environments with rich health information exchange (Connected) and a comparison cohort with less information available electronically (Unconnected). Results: Unconnected physicians were significantly more likely to be missing information they needed for patient encounters (13% of encounters for Unconnected physicians vs 7% for Connected physicians). Unconnected physicians were also more likely to report that missing information had consequences (23% vs 13% of encounters). Lab results were the most common type of patient information missing for both Unconnected and Connected specialists (25% for Unconnected physicians vs 11% Connected physicians). Conclusions: The results from this study indicate that Canadian physicians commonly experience information gaps in ambulatory encounters, and that many of these gaps are of consequence to themselves, their patients, and the healthcare system. Wasting physician and patient time, as well as being forced to proceed with incomplete information, were the most common consequences of information gaps reported. UR - http://medinform.jmir.org/2015/1/e1/ UR - http://dx.doi.org/10.2196/medinform.4066 UR - http://www.ncbi.nlm.nih.gov/pubmed/25595130 ID - info:doi/10.2196/medinform.4066 ER - TY - JOUR AU - Otte-Trojel, Terese AU - de Bont, Antoinette AU - van de Klundert, Joris AU - Rundall, G. Thomas PY - 2014/11/21 TI - Characteristics of Patient Portals Developed in the Context of Health Information Exchanges: Early Policy Effects of Incentives in the Meaningful Use Program in the United States JO - J Med Internet Res SP - e258 VL - 16 IS - 11 KW - medical informatics KW - meaningful use KW - electronic health records KW - patient-centered care N2 - Background: In 2014, the Centers for Medicare & Medicaid Services in the United States launched the second stage of its Electronic Health Record (EHR) Incentive Program, providing financial incentives to providers to meaningfully use their electronic health records to engage patients online. Patient portals are electronic means to engage patients by enabling secure access to personal medical records, communication with providers, various self-management tools, and administrative functionalities. Outcomes of patient portals have mainly been reported in large integrated health systems. This may now change as the EHR Incentive Program enables and supports the use of patient portals in other types of health systems. In this paper, we focus on Health Information Exchanges (HIE): entities that facilitate data exchange within networks of independent providers. Objective: In response to the EHR Incentive Program, some Health Information Exchanges in the United States are developing patient portals and offering them to their network of providers. Such patient portals hold high value for patients, especially in fragmented health system contexts, due to the portals? ability to integrate health information from an array of providers and give patients one access point to this information. Our aim was to report on the early effects of the EHR incentives on patient portal development by HIEs. Specifically, we describe the characteristics of these portals, identify factors affecting adoption by providers during the 2013-2014 time frame, and consider what may be the primary drivers of providers? adoption of patient portals in the future. Methods: We identified four HIEs that were developing patient portals as of spring 2014. We collected relevant documents and conducted interviews with six HIE leaders as well as two providers that were implementing the portals in their practices. We performed content analysis on these data to extract information pertinent to our study objectives. Results: Our findings suggest that there are two primary types of patient portals available to providers in HIEs: (1) portals linked to EHRs of individual providers or health systems and (2) HIE-sponsored portals that link information from multiple providers? EHRs. The decision of providers in the HIEs to adopt either one of these portals appears to be a trade-off between functionality, connectivity, and cost. Our findings also suggest that while the EHR Incentive Program is influencing these decisions, it may not be enough to drive adoption. Rather, patient demand for access to patient portals will be necessary to achieve widespread portal adoption and realization of potential benefits. Conclusions: Optimizing patient value should be the main principle underlying policies intending to increase online patient engagement in the third stage of the EHR Incentive Program. We propose a number of features for the EHR Incentive Program that will enhance patient value and thereby support the growth and sustainability of patient portals provided by Health Information Exchanges. UR - http://www.jmir.org/2014/11/e258/ UR - http://dx.doi.org/10.2196/jmir.3698 UR - http://www.ncbi.nlm.nih.gov/pubmed/25447837 ID - info:doi/10.2196/jmir.3698 ER - TY - JOUR AU - Kruse, Scott Clemens AU - Regier, Verna AU - Rheinboldt, T. Kurt PY - 2014/09/30 TI - Barriers Over Time to Full Implementation of Health Information Exchange in the United States JO - JMIR Med Inform SP - e26 VL - 2 IS - 2 KW - medical informatics KW - electronic health record (EHR) KW - electronic medical records (EMR) KW - health information technology (HIT) KW - quality improvement KW - national health policy KW - workflow KW - past trends N2 - Background: Although health information exchanges (HIE) have existed since their introduction by President Bush in his 2004 State of the Union Address, and despite monetary incentives earmarked in 2009 by the health information technology for economic and clinical health (HITECH) Act, adoption of HIE has been sparse in the United States. Research has been conducted to explore the concept of HIE and its benefit to patients, but viable business plans for their existence are rare, and so far, no research has been conducted on the dynamic nature of barriers over time. Objective: The aim of this study is to map the barriers mentioned in the literature to illustrate the effect, if any, of barriers discussed with respect to the HITECH Act from 2009 to the early months of 2014. Methods: We conducted a systematic literature review from CINAHL, PubMed, and Google Scholar. The search criteria primarily focused on studies. Each article was read by at least two of the authors, and a final set was established for evaluation (n=28). Results: The 28 articles identified 16 barriers. Cost and efficiency/workflow were identified 15% and 13% of all instances of barriers mentioned in literature, respectively. The years 2010 and 2011 were the most plentiful years when barriers were discussed, with 75% and 69% of all barriers listed, respectively. Conclusions: The frequency of barriers mentioned in literature demonstrates the mindfulness of users, developers, and both local and national government. The broad conclusion is that public policy masks the effects of some barriers, while revealing others. However, a deleterious effect can be inferred when the public funds are exhausted. Public policy will need to lever incentives to overcome many of the barriers such as cost and impediments to competition. Process improvement managers need to optimize the efficiency of current practices at the point of care. Developers will need to work with users to ensure tools that use HIE resources work into existing workflows. UR - http://medinform.jmir.org/2014/2/e26/ UR - http://dx.doi.org/10.2196/medinform.3625 UR - http://www.ncbi.nlm.nih.gov/pubmed/25600635 ID - info:doi/10.2196/medinform.3625 ER - TY - JOUR AU - Feldman, S. Sue AU - Schooley, L. Benjamin AU - Bhavsar, P. Grishma PY - 2014/08/15 TI - Health Information Exchange Implementation: Lessons Learned and Critical Success Factors From a Case Study JO - JMIR Med Inform SP - e19 VL - 2 IS - 2 KW - health information exchange KW - blended value collaboration enactment framework KW - HIE value proposition KW - interorganizational systems KW - HIE implementation N2 - Background: Much attention has been given to the proposition that the exchange of health information as an act, and health information exchange (HIE), as an entity, are critical components of a framework for health care change, yet little has been studied to understand the value proposition of implementing HIE with a statewide HIE. Such an organization facilitates the exchange of health information across disparate systems, thus following patients as they move across different care settings and encounters, whether or not they share an organizational affiliation. A sociotechnical systems approach and an interorganizational systems framework were used to examine implementation of a health system electronic medical record (EMR) system onto a statewide HIE, under a cooperative agreement with the Office of the National Coordinator for Health Information Technology, and its collaborating organizations. Objective: The objective of the study was to focus on the implementation of a health system onto a statewide HIE; provide insight into the technical, organizational, and governance aspects of a large private health system and the Virginia statewide HIE (organizations with the shared goal of exchanging health information); and to understand the organizational motivations and value propositions apparent during HIE implementation. Methods: We used a formative evaluation methodology to investigate the first implementation of a health system onto the statewide HIE. Qualitative methods (direct observation, 36 hours), informal information gathering, semistructured interviews (N=12), and document analysis were used to gather data between August 12, 2012 and June 24, 2013. Derived from sociotechnical concepts, a Blended Value Collaboration Enactment Framework guided the data gathering and analysis to understand organizational stakeholders? perspectives across technical, organizational, and governance dimensions. Results: Several challenges, successes, and lessons learned during the implementation of a health system to the statewide HIE were found. The most significant perceived success was accomplishing the implementation, although many interviewees also underscored the value of a project champion with decision-making power. In terms of lessons learned, social reasons were found to be very significant motivators for early implementation, frequently outweighing economic motivations. It was clear that understanding the guides early in the project would have mitigated some of the challenges that emerged, and early communication with the electronic health record vendor so that they have a solid understanding of the undertaking was critical. An HIE implementations evaluation framework was found to be useful for assessing challenges, motivations, value propositions for participating, and success factors to consider for future implementations. Conclusions: This case study illuminates five critical success factors for implementation of a health system onto a statewide HIE. This study also reveals that organizations have varied motivations and value proposition perceptions for engaging in the exchange of health information, few of which, at the early stages, are economically driven. UR - http://medinform.jmir.org/2014/2/e19/ UR - http://dx.doi.org/10.2196/medinform.3455 UR - http://www.ncbi.nlm.nih.gov/pubmed/25599991 ID - info:doi/10.2196/medinform.3455 ER - TY - JOUR AU - Unertl, M. Kim AU - Johnson, B. Kevin AU - Gadd, S. Cynthia AU - Lorenzi, M. Nancy PY - 2013/10/29 TI - Bridging Organizational Divides in Health Care: An Ecological View of Health Information Exchange JO - JMIR Med Inform SP - e3 VL - 1 IS - 1 KW - health information systems KW - qualitative research KW - ethnography KW - community networks KW - information sharing KW - organizational models KW - information ecology N2 - Background: The fragmented nature of health care delivery in the United States leads to fragmented health information and impedes patient care continuity and safety. Technologies to support interorganizational health information exchange (HIE) are becoming more available. Understanding how HIE technology changes health care delivery and affects people and organizations is crucial to long-term successful implementation. Objective: Our study investigated the impacts of HIE technology on organizations, health care providers, and patients through a new, context-aware perspective, the Regional Health Information Ecology. Methods: We conducted more than 180 hours of direct observation, informal interviews during observation, and 9 formal semi-structured interviews. Data collection focused on workflow and information flow among health care team members and patients and on health care provider use of HIE technology. Results: We structured the data analysis around five primary information ecology components: system, locality, diversity, keystone species, and coevolution. Our study identified three main roles, or keystone species, involved in HIE: information consumers, information exchange facilitators, and information repositories. The HIE technology impacted patient care by allowing providers direct access to health information, reducing time to obtain health information, and increasing provider awareness of patient interactions with the health care system. Developing the infrastructure needed to support HIE technology also improved connections among information technology support groups at different health care organizations. Despite the potential of this type of technology to improve continuity of patient care, HIE technology adoption by health care providers was limited. Conclusions: To successfully build a HIE network, organizations had to shift perspectives from an ownership view of health data to a continuity of care perspective. To successfully integrate external health information into clinical work practices, health care providers had to move toward understanding potential contributions of external health information. Our study provides a foundation for future context-aware development and implementation of HIE technology. Integrating concepts from the Regional Health Information Ecology into design and implementation may lead to wider diffusion and adoption of HIE technology into clinical work. UR - http://www.jmir.org/2013/1/e3/ UR - http://dx.doi.org/10.2196/medinform.2510 UR - http://www.ncbi.nlm.nih.gov/pubmed/25600166 ID - info:doi/10.2196/medinform.2510 ER -