Dynamic Consent: A Possible Solution to Improve Patient Confidence and Trust in How Electronic Patient Records Are Used in Medical Research

Dynamic Consent: A Possible Solution to Improve Patient Confidence and Trust in How Electronic Patient Records Are Used in Medical Research

Dynamic Consent: A Possible Solution to Improve Patient Confidence and Trust in How Electronic Patient Records Are Used in Medical Research

Journals

  1. Molldrem S, Smith A. Reassessing the Ethics of Molecular HIV Surveillance in the Era of Cluster Detection and Response: Toward HIV Data Justice. The American Journal of Bioethics 2020;20(10):10 View
  2. Stoeklé H, Mamzer-Bruneel M, Frouart C, Le Tourneau C, Laurent-Puig P, Vogt G, Hervé C. Molecular Tumor Boards: Ethical Issues in the New Era of Data Medicine. Science and Engineering Ethics 2018;24(1):307 View
  3. Abdelhamid M, Gaia J, Sanders G. Putting the Focus Back on the Patient: How Privacy Concerns Affect Personal Health Information Sharing Intentions. Journal of Medical Internet Research 2017;19(9):e169 View
  4. Prictor M, Lewis M, Newson A, Haas M, Baba S, Kim H, Kokado M, Minari J, Molnár-Gábor F, Yamamoto B, Kaye J, Teare H. Dynamic Consent: An Evaluation and Reporting Framework. Journal of Empirical Research on Human Research Ethics 2020;15(3):175 View
  5. Budin-Ljøsne I, Teare H, Kaye J, Beck S, Bentzen H, Caenazzo L, Collett C, D’Abramo F, Felzmann H, Finlay T, Javaid M, Jones E, Katić V, Simpson A, Mascalzoni D. Dynamic Consent: a potential solution to some of the challenges of modern biomedical research. BMC Medical Ethics 2017;18(1) View
  6. Orth M, Aufenanger J, Hoffmann G, Lichtinghagen R, Stiegler Y, Peetz D, für die Sektion Labormanagement der Deutschen Vereinten Gese . Chancen und Risiken von e-Health in der Labormedizin. LaboratoriumsMedizin 2016;40(4):227 View
  7. Brown B, Smeeth L, van Staa T, Buchan I. Better care through better use of data in GP–patient partnerships. British Journal of General Practice 2017;67(655):54 View
  8. Wicks P, Hotopf M, Narayan V, Basch E, Weatherall J, Gray M. It’s a long shot, but it just might work! Perspectives on the future of medicine. BMC Medicine 2016;14(1) View
  9. Abdul Aziz M, Mohd Yusof A. Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia?. Asian Bioethics Review 2019;11(2):209 View
  10. Sheehan M, Thompson R, Fistein J, Davies J, Dunn M, Parker M, Savulescu J, Woods K. Authority and the Future of Consent in Population-Level Biomedical Research. Public Health Ethics 2019 View
  11. Brothers K, Goldenberg A. Ethical and Legal Considerations for Pediatric Biobank Consent: Current and Future Perspectives. Personalized Medicine 2016;13(6):597 View
  12. Rocha V, Pereira D, Pereira M, Silva S. Validade e Concordância do registro em prontuário do uso de serviços da Rede de Atenção à Saúde por idosos. Ciência & Saúde Coletiva 2020;25(6):2103 View
  13. Parra-Calderón C, Kaye J, Moreno-Conde A, Teare H, Nuñez-Benjumea F. Desiderata for digital consent in genomic research. Journal of Community Genetics 2018;9(2):191 View
  14. Alaqra A, Fischer-Hübner S, Framner E. Enhancing Privacy Controls for Patients via a Selective Authentic Electronic Health Record Exchange Service: Qualitative Study of Perspectives by Medical Professionals and Patients. Journal of Medical Internet Research 2018;20(12):e10954 View
  15. Vezyridis P, Timmons S. Dissenting from care.data: an analysis of opt-out forms. Journal of Medical Ethics 2016;42(12):792 View
  16. Satinsky E, Driessens C, Crepaz-Keay D, Kousoulis A. Mental health service users’ perceptions of data sharing and data protection: a short qualitative report. BMJ Health & Care Informatics 2018;25(4):239 View
  17. Cato K, Bockting W, Larson E. Did I Tell You That? Ethical Issues Related to Using Computational Methods to Discover Non-Disclosed Patient Characteristics. Journal of Empirical Research on Human Research Ethics 2016;11(3):214 View
  18. Lensink M, Jongsma K, Boers S, Noordhoek J, Beekman J, Bredenoord A. Responsible use of organoids in precision medicine: the need for active participant involvement. Development 2020;147(7) View
  19. Chretien J, Chretien K, Pavlin J. Long-term Health Consequences of Military Service. Public Health Reports 2016;131(6):834 View
  20. Dixon-Woods M, Kocman D, Brewster L, Willars J, Laurie G, Tarrant C. A qualitative study of participants’ views on re-consent in a longitudinal biobank. BMC Medical Ethics 2017;18(1) View
  21. Cumyn A, Barton A, Dault R, Cloutier A, Jalbert R, Ethier J. Informed consent within a learning health system: A scoping review. Learning Health Systems 2020;4(2) View
  22. Crowhurst N, Bergin M, Wells J. Implications for nursing and healthcare research of the general data protection regulation and retrospective reviews of patients’ data. Nurse Researcher 2019;27(1):45 View
  23. Mostert M, Bredenoord A, Biesaart M, van Delden J. Big Data in medical research and EU data protection law: challenges to the consent or anonymise approach. European Journal of Human Genetics 2016;24(7):956 View
  24. Harris J, Brierley R, Pufulete M, Bucciarelli-Ducci C, Stokes E, Greenwood J, Dorman S, Anderson R, Rogers C, Wordsworth S, Berry S, Reeves B. A national registry to assess the value of cardiovascular magnetic resonance imaging after primary percutaneous coronary intervention pathway activation: a feasibility cohort study. Health Services and Delivery Research 2019;7(24):1 View
  25. Garrison N, Sathe N, Antommaria A, Holm I, Sanderson S, Smith M, McPheeters M, Clayton E. A systematic literature review of individuals’ perspectives on broad consent and data sharing in the United States. Genetics in Medicine 2016;18(7):663 View
  26. Canaway R, Boyle D, Manski‐Nankervis J, Bell J, Hocking J, Clarke K, Clark M, Gunn J, Emery J. Gathering data for decisions: best practice use of primary care electronic records for research. Medical Journal of Australia 2019;210(S6) View
  27. Khazaei H, McGregor C, Eklund J, El-Khatib K. Real-Time and Retrospective Health-Analytics-as-a-Service: A Novel Framework. JMIR Medical Informatics 2015;3(4):e36 View
  28. Jeanneret R, Spiranovic C, Eckstein L, McWhirter R, Arstein-Kerslake A, Scanlan J, Kirkby K, Watters P, Vickers J. Enhancing early detection of cognitive impairment in the criminal justice system: feasibility of a proposed method. Current Issues in Criminal Justice 2019;31(1):60 View
  29. Jacquemard T, Doherty C, Fitzsimons M. Examination and diagnosis of electronic patient records and their associated ethics: a scoping literature review. BMC Medical Ethics 2020;21(1) View
  30. Stoeklé H, Bollet M, Cobat A, Charlier P, Bloch O, Flatot J, Draghi C, Tolyan V, Hervé C, Desvaux P, Uzan L, Grynberg M, Alcaïs A, Tolédano A, Vogt G. French‐style genetics v. 2.0: The “e‐CohortE” project. Clinical Genetics 2019;96(4):330 View
  31. McIntosh A, Stewart R, John A, Smith D, Davis K, Sudlow C, Corvin A, Nicodemus K, Kingdon D, Hassan L, Hotopf M, Lawrie S, Russ T, Geddes J, Wolpert M, Wölbert E, Porteous D. Data science for mental health: a UK perspective on a global challenge. The Lancet Psychiatry 2016;3(10):993 View
  32. Prictor M, Teare H, Kaye J. Equitable Participation in Biobanks: The Risks and Benefits of a “Dynamic Consent” Approach. Frontiers in Public Health 2018;6 View
  33. Spencer K, Sanders C, Whitley E, Lund D, Kaye J, Dixon W. Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study. Journal of Medical Internet Research 2016;18(4):e66 View
  34. Dennis S, Garrett P, Yim H, Hamm J, Osth A, Sreekumar V, Stone B. Privacy versus open science. Behavior Research Methods 2019;51(4):1839 View
  35. Tully M, Bozentko K, Clement S, Hunn A, Hassan L, Norris R, Oswald M, Peek N. Investigating the Extent to Which Patients Should Control Access to Patient Records for Research: A Deliberative Process Using Citizens’ Juries. Journal of Medical Internet Research 2018;20(3):e112 View
  36. Pang P, Chang S, Verspoor K, Clavisi O. The Use of Web-Based Technologies in Health Research Participation: Qualitative Study of Consumer and Researcher Experiences. Journal of Medical Internet Research 2018;20(10):e12094 View
  37. Schneble C, Elger B, Shaw D. All Our Data Will Be Health Data One Day: The Need for Universal Data Protection and Comprehensive Consent. Journal of Medical Internet Research 2020;22(5):e16879 View
  38. Borry P, Bentzen H, Budin-Ljøsne I, Cornel M, Howard H, Feeney O, Jackson L, Mascalzoni D, Mendes Á, Peterlin B, Riso B, Shabani M, Skirton H, Sterckx S, Vears D, Wjst M, Felzmann H. The challenges of the expanded availability of genomic information: an agenda-setting paper. Journal of Community Genetics 2018;9(2):103 View
  39. Stoeklé H, Deleuze J, Vogt G, Hervé C. Vers un consentement éclairé dynamique. médecine/sciences 2017;33(2):188 View
  40. Bijlsma R, Bredenoord A, Gadellaa-Hooijdonk C, Lolkema M, Sleijfer S, Voest E, Ausems M, Steeghs N. Unsolicited findings of next-generation sequencing for tumor analysis within a Dutch consortium: clinical daily practice reconsidered. European Journal of Human Genetics 2016;24(10):1496 View
  41. Budin-Ljøsne I, Mascalzoni D, Soini S, Machado H, Kaye J, Bentzen H, Rial-Sebbag E, D'Abramo F, Witt M, Schamps G, Katić V, Krajnovic D, Harris J. Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?. Biopreservation and Biobanking 2016;14(3):241 View
  42. Holub P, Swertz M, Reihs R, van Enckevort D, Müller H, Litton J. BBMRI-ERIC Directory: 515 Biobanks with Over 60 Million Biological Samples. Biopreservation and Biobanking 2016;14(6):559 View
  43. Stoeklé H, Ivasilevitch A, Hervé C. Dynamic Consent in Neuroscience Too?. AJOB Neuroscience 2021;12(1):70 View
  44. Jacquemard T, Doherty C, Fitzsimons M. The anatomy of electronic patient record ethics: a framework to guide design, development, implementation, and use. BMC Medical Ethics 2021;22(1) View
  45. Kaye J, Bell J, Briceno L, Mitchell C. Biobank Report: United Kingdom. Journal of Law, Medicine & Ethics 2016;44(1):96 View
  46. Menking A, McDonald D. Image Wishlist: Context and Images in Commons-Based Peer Production Communities. Proceedings of the ACM on Human-Computer Interaction 2020;4(CSCW2):1 View
  47. Lensink M, Boers S, Jongsma K, Carter S, van der Ent C, Bredenoord A. Organoids for personalized treatment of Cystic Fibrosis: Professional perspectives on the ethics and governance of organoid biobanking. Journal of Cystic Fibrosis 2021;20(3):443 View
  48. Wallace S, Miola J. Adding dynamic consent to a longitudinal cohort study: A qualitative study of EXCEED participant perspectives. BMC Medical Ethics 2021;22(1) View
  49. Cumyn A, Dault R, Barton A, Cloutier A, Ethier J. Citizens, Research Ethics Committee Members and Researchers’ Attitude Toward Information and Consent for the Secondary Use of Health Data: Implications for Research Within Learning Health Systems. Journal of Empirical Research on Human Research Ethics 2021;16(3):165 View
  50. Vears D, Minion J, Roberts S, Cummings J, Machirori M, Murtagh M. Views on Genomic Research Result Delivery Methods and Informed Consent: A Review. Personalized Medicine 2021;18(3):295 View
  51. Scheibner J, Sleigh J, Ienca M, Vayena E. Benefits, challenges, and contributors to success for national eHealth systems implementation: a scoping review. Journal of the American Medical Informatics Association 2021;28(9):2039 View
  52. Yusof M, Teo C, Ng C. Electronic informed consent criteria for research ethics review: a scoping review. BMC Medical Ethics 2022;23(1) View
  53. Desingh V, R B. Internet of Things adoption barriers in the Indian healthcare supply chain: An ISM‐fuzzy MICMAC approach. The International Journal of Health Planning and Management 2022;37(1):318 View
  54. Buhr L, Kaufmann P, Jörß K. Attitudes of Patients With Chronic Heart Failure Toward Digital Device Data for Self-documentation and Research in Germany: Cross-sectional Survey Study. JMIR Cardio 2022;6(2):e34959 View
  55. de Man Y, Wieland-Jorna Y, Torensma B, de Wit K, Francke A, Oosterveld-Vlug M, Verheij R. Opt-In and Opt-Out Consent Procedures for the Reuse of Routinely Recorded Health Data in Scientific Research and Their Consequences for Consent Rate and Consent Bias: Systematic Review. Journal of Medical Internet Research 2023;25:e42131 View
  56. Ivanova D, Katsaounis P. Workshop Proceedings: Informed Consent in Biobanking–from the Key Barriers, Challenges, and Perceptions to Digital Innovations. Innovations in Digital Health, Diagnostics, and Biomarkers 2022;2(2022):16 View
  57. Zenker S, Strech D, Ihrig K, Jahns R, Müller G, Schickhardt C, Schmidt G, Speer R, Winkler E, von Kielmansegg S, Drepper J. Data protection-compliant broad consent for secondary use of health care data and human biosamples for (bio)medical research: Towards a new German national standard. Journal of Biomedical Informatics 2022;131:104096 View
  58. Chang V, Ramachandran M, Li C. Special issue editorial on emerging trends in internet of things for e‐health and medical supply chain systems. Expert Systems 2022;39(4) View
  59. de Jongh D, Massey E, Berishvili E, Fonseca L, Lebreton F, Bellofatto K, Bignard J, Seissler J, Buerck L, Honarpisheh M, Zhang Y, Lei Y, Pehl M, Follenzi A, Olgasi C, Cucci A, Borsotti C, Assanelli S, Piemonti L, Citro A, Pellegrini S, Pignatelli C, Campo F, Thaunat O, Cronin A, Mey D, Parisotto C, Rossi G, Kugelmeier P, Wolint P, Mühlemann M, Pal-Kutas K, Cavallaro M, Götz J, Müller J, Bunnik E. Organoids: a systematic review of ethical issues. Stem Cell Research & Therapy 2022;13(1) View
  60. Muller S, van Thiel G, Mostert M, van Delden J. Dynamic consent, communication and return of results in large-scale health data reuse: Survey of public preferences. DIGITAL HEALTH 2023;9 View
  61. Sanchini V, Marelli L, Monturano M, Bonizzi G, Peruzzotti G, Orecchia R, Pravettoni G. A comprehensive ethics and data governance framework for data-intensive health research: Lessons from an Italian cancer research institute. Accountability in Research 2023:1 View
  62. Molldrem S, Smith A, Subrahmanyam V. Toward Consent in Molecular HIV Surveillance?: Perspectives of Critical Stakeholders. AJOB Empirical Bioethics 2024;15(1):66 View
  63. Lee A, Koo D, Kim I, Lee E, Kim H, Yoo S, Kim J, Choi E, Lee H. Identifying facilitators of and barriers to the adoption of dynamic consent in digital health ecosystems: a scoping review. BMC Medical Ethics 2023;24(1) View
  64. Afraz A, Montazeri M, Shahrbabaki M, Ahmadian L, Jahani Y. The viewpoints of parents of children with mental disorders regarding the confidentiality and security of their children’s information in the Iranian national electronic health record system. International Journal of Medical Informatics 2024;183:105334 View
  65. Sermontyte-Baniule R, Helander N, Nieminen H. A Literature Perspective of Stakeholder’s Perceptions of Value and Risks for the Secondary Use of Health Data. SN Computer Science 2024;5(3) View
  66. Prinsen L. Introducing dynamic consent for improved trust and privacy in research involving human biological material and associated data in South Africa. Frontiers in Genetics 2024;15 View
  67. Brierley R, Pufulete M, Harris J, Bucciarelli-Ducci C, Greenwood J, Dorman S, Anderson R, Rogers C, Reeves B. Developing a UK registry to investigate the role of cardiovascular magnetic resonance (CMR) in patients who activate the primary percutaneous coronary intervention (PPCI) pathway: a multicentre, feasibility study linking routinely collected electronic patient data. BMJ Open 2018;8(3):e018987 View
  68. Taylor M, Whitton T. Public Interest, Health Research and Data Protection Law: Establishing a Legitimate Trade-Off between Individual Control and Research Access to Health Data. Laws 2020;9(1):6 View
  69. Xin M, Li Q, Wang D, Wang Z. Organoids for Cancer Research: Advances and Challenges. Advanced Biology 2024 View

Books/Policy Documents

  1. Knudsen L, Hansen P, Pedersen M, Merlo D. Encyclopedia of Environmental Health. View
  2. Greaves F, Rozenblum R. Key Advances in Clinical Informatics. View
  3. Schuler Scott A, Goldsmith M, Teare H, Webb H, Creese S. Trust Management XIII. View
  4. Mylonas P. GeNeDis 2016. View
  5. Hutton L, Henderson T. Transparent Data Mining for Big and Small Data. View
  6. Charles W. Comprehensive Precision Medicine. View
  7. Maierà A. GDPR Requirements for Biobanking Activities Across Europe. View
  8. Rubeis G. Ethics of Medical AI. View