Participants thought that service users should be able to manage who can access their IECR and what information they can view and that this required well-designed consent options that provided service users with explicit control over their IECR. The issue of consent was complicated when considering inpatient admissions and the level of agency that service users maintained during periods of acute symptoms. Participants thought that access to the IECR should be based on a trusting relationship between the service user and the care professional. However, in a time- and resource-limited care system, there may be limited opportunities to develop this trust before care professionals need access to a service user’s IECR. In reflecting on how service user autonomy could already be circumvented in the mental health care system, some participants were concerned with how an IECR may be used in such situations. For example, one participant reflected on the fact that, in some circumstances, people with a diagnosis of schizophrenia could lose agency over their finances.

A question in both vignettes prompted participants to consider how the IECR should be managed in voluntary and involuntary inpatient care scenarios. Five participants thought that access to the IECR should be limited during inpatient care to reduce any distress that service users may experience knowing that their IECR is being accessed, especially without their consent. Participants acknowledged that the information in the IECR could benefit service users’ inpatient care. However, they thought that it should only be accessed with informed consent from the service user or a trusted family member or carer.

Some participants assumed that, during a voluntary admission, the service user would have access to their IECR, whereas in an involuntary admission, they would not. Participants thought that, if the service user cannot access and manage their IECR during an inpatient stay, which participants assumed would be the case, then no information should be uploaded to their IECR until after they are discharged and with their consent. Some participants considered that information could still be uploaded to the IECR during an inpatient stay but flagged for review by the service user before being made available for other care professionals to view after the admission.

Two participants thought that the record should be accessed and kept up-to-date during inpatient stays to inform the service user’s treatment.

All participants discussed the role of trust in shaping how service users share information with care professionals, which would also shape service users’ perceptions of the IECR. Participants thought that service users would need to meet the care professionals first to ensure that they can establish a rapport and trust before providing them with access to their IECR. An element of building trust related to theme 2 was that care professionals should get to know the service user rather than just making assumptions about them based on their IECR. The need to establish a trusting relationship was contextualized with comments that Jona and Riley from the vignettes might feel frightened and isolated if they moved locations and saw a new care professional. Participants also questioned whether access to the IECR could be revoked if Jona or Riley found that they could not establish trust or rapport with the care professional.

Five participants raised the broader issue that service users might not trust the mental health care system or might have developed trust issues from previous life experiences, which may factor into whether they trust the use of an IECR.

Five participants discussed the need for transparency over who accessed their IECR, what organization they were from, and what information they accessed or uploaded. Some participants discussed the current lack of transparency over what information is shared between care professionals. Transparency was also viewed as important for managing their symptoms, such as paranoia over who might be accessing their record. Some participants also thought that there needed to be transparency within care encounters as to whether the care professional had read the record and sensitivity regarding how information in the IECR was raised with the service user.

All participants thought that service users should have control over who can access the IECR and that providing access should be based on informed consent. Participants also questioned whether consent should be continuous (consent is provided for each care professional until the service user revokes it) or episodic (care professionals would have to seek consent each time they wanted to access a service user’s IECR). Participants outlined how Jona and Riley should only consider providing consent to care professionals with whom they have a current and ongoing trusting relationship. One participant recommended that the default IECR setting should be to remove access for care professionals whom they have not seen in a while. There were also questions about how nuanced the consent options would be and whether service users could reveal only parts of their record to certain care professionals. The vignettes explicitly stated that verbal consent would be sought from service users for a care professional to access their record. Two participants questioned how their consent would be documented so they had evidence that they had given it. Some participants questioned whether care professionals could share information in the IECR with other care professionals without service user consent.

In addition to having a thorough and informed consent process, participants thought that consent preferences should be visible to service users so that they can be confident that they are being followed. Participants identified that a potential barrier to informed consent is when service users are unwell or experiencing symptoms that may impact their ability to consider the benefits and risks of providing care professionals with access to their IECR.

Five participants raised queries about family involvement in the IECR, including how much control service users had over family members accessing their IECR. One participant identified that there may be circumstances in which a family member or another support person might need to access Riley’s record to support them. Conversely, another participant, in reflecting on Riley’s story, considered that, if Riley had a negative relationship with her parents, she might not want to provide access to her family members.

In addition to deciding who can access the IECR, 6 participants thought that service users should have control over what information different care professionals can view. One participant outlined how the onus should be on the care professional to justify to the service users the information they need to access in the IECR. Some participants framed this as ensuring that care professionals can only access what is relevant to their care and information that they will use in providing care. Participants also identified factors that service users might consider when determining what information to allow care professionals to access, including whether the information is accurate and up-to-date, whether they are comfortable sharing it with a new care professional, whether it is relevant for that care professional, and the current reason they are accessing care. Some participants also acknowledged that the IECR may include information from difficult periods in a service user’s life, which they may not want current care professionals to access.

The concept of “relevance” was pervasive across several answers that participants provided as to who should be able to access their IECR and what information they should be able to view. These 2 issues intersected in that relevant information may depend on who is accessing it and in what circumstances. For example, one participant thought that, if Jona gave the NDIS access to their IECR, it should only be for information relevant to supporting their application. This issue of relevance is further explored in theme 3.

Seven participants were concerned that the IECR would be used as the key source of information in providing care and would override service users’ voice and needs. Underlying this concern was the risk that the IECR may only reflect care professionals’ view of the service user, which may be outdated, include only negative information, and possibly include stigmatizing or judgmental information. However, 2 participants thought that it would be valuable for their care professional to review the IECR before a session so that they have the most up-to-date information. The risk that the information in the IECR will be prioritized over service users’ voice could be managed by including service users’ views and needs in the record (subtheme 2.2) and by ensuring the relevance, accuracy, and quality of the information in the IECR (theme 3).

Nine participants raised the risk that an IECR might entrench service users’ experiences of stigma, judgment, and discrimination both inside and outside the mental health care system. Participants were concerned that an IECR would allow for a greater reach and permanency of information that might negatively impact the care they receive, including their ability to access care. Several participants were concerned that information in the IECR might “leak” outside the health care system, such as to employers, and would lead to stigma and discrimination in other areas of life. There were also concerns about how certain information in the IECR could lead to the experience of stigma and discrimination within the health care system. For example, some participants were concerned that certain diagnoses being stigmatized, such as borderline personality disorder and also the label “mentally ill,” may automatically lead to someone being treated differently by certain care professionals. Some participants discussed how they had opted out of My Health Record due to the risk of their diagnosis being shared too widely and negatively impacting their access to care.

Four participants were concerned that historical information from previous admissions, such as diagnoses and treatments irrelevant to their current care, might lead care professionals to prejudge or overlook their current issues or might impact their access to care. For example, one participant outlined how much of the information documented about them was from when they were at their worst, so future clinicians who access the IECR will only see the negative information that has followed them. This situation may inform a deficit-based rather than a strengths-based approach to care—especially if their strengths and achievements are not documented in the IECR. Another participant shared how their previous eating disorder diagnosis still impacted the care they received today even though they had recovered and no longer met the criteria for an eating disorder diagnosis.

Participants were also concerned that information relevant in one care context could be perceived negatively or be stigmatizing in another context, especially by care professionals with less knowledge of mental health. For example, one participant discussed how their previous drug use may negatively affect their access to mental health care even though it was a historical issue that they had overcome. This issue relates to whether information is relevant to care professionals, as discussed previously and further in theme 3. Participants suggested that care professionals needed to document information in their IECR in a way that was respectful and balanced, with consideration to how the service user may view the information.

Six participants were concerned that care professionals who accessed the IECR would focus on information from other care professionals and not on the service user’s perspective. The risk of having information precede service users and shape their care before they can discuss their needs was viewed as entrenching a biomedical model of care in which service users’ individual needs are not recognized or are viewed through a diagnostic lens. Furthermore, participants identified a risk that care professionals may not capture the service users’ perspectives or voice in the IECR, further amplifying the care professionals’ perceptions, ideas, and judgments. Even if the service user could contribute to the IECR, participants were concerned that clinical knowledge would be privileged in the IECR and in how the IECR is used. There were also concerns that the IECR may lead to some health issues, especially physical health issues, being overshadowed by the mental health issues documented in the IECR. Some participants thought that it was important for the service user to be able to tell their story before the care professional accessed their IECR as what is written in the IECR may be framed differently.

Although a number of participants thought that it was important for a service user perspective to be included in the IECR, there was less consideration of whether service users should directly add information to their IECR. One participant, when initially asked about the potential for a service user to contribute to their IECR, thought that it was not necessary or valuable. However, later in the interview, they revisited their response and suggested that it could be valuable to have a service user write up their story. There was also consideration given to the potential for service users to add notes to care professionals’ records that put information in their own words or to identify areas in which they disagreed with their care professionals. One participant thought that there was a risk that service users might change their IECR when unwell, which could negatively impact their care.

There was an assumption in the vignettes that the IECR would collate all information about a service user. However, participants were generally supportive of a summary of information being included in the IECR and thought that there should be a standard template or guidance for what should be documented. Participants thought that the information documented in the IECR should be relevant to their care and support future treatment, such as their diagnosis, medication, care plan, evaluation of previous treatment, family medical history, presenting problems, the types of services being accessed, and what participants do to manage their condition. One participant thought that the IECR should not include the personal “chit chat” that might also be shared during the clinical encounter. Participants also discussed that service users would need to determine what to disclose to care professionals that might be uploaded to an IECR and the risks posed by this information being shared. One participant outlined the balance of providing enough information to receive appropriate care but not so much as to create a risk of that information being used against them. For example, it may be appropriate to have information about alcohol and drug counseling in their IECR, but depending on how that information is presented, it could be interpreted in a certain way that does not represent their current needs or presentation.

Some participants were concerned that incomplete information could create an inaccurate picture of the service user. These participants were not necessarily in favor of everything being documented in the IECR, with one participant, who had concerns with gaps in their IECR, also stating that only relevant information to support treatment and not personal information should be uploaded. Participants also had questions about what would happen to their information if they opted out of the IECR for a period and then opted back in. In general, participants did not consider that the IECR should be a comprehensive record of all the information from the various services they accessed but that the IECR needed to present an accurate picture of the person’s needs.

The issue of sensitive information was only explicitly raised by 3 participants and, generally, was considered as not appropriate to document in an IECR. One participant classed their sexuality as potentially sensitive information, whereas another classed their experiences of hallucinations and delusions as sensitive information.

One of the scenarios in the case studies was of a care professional watering down information uploaded to the IECR. Three participants were concerned that such a scenario may negatively impact the service user if the IECR does not reflect their care and condition. It was acknowledged that watering down information might be done for a valid reason, such as where information may be triggering for the service user. Participants considered that reducing the level of detail documented should be done in conversation with the service user and for their benefit and that information could be reframed to be shared on the IECR. Watering down information may also impact service users’ ability to access other services, such as the NDIS, if those services rely on the IECR to assess eligibility for access to care. One participant outlined that, in such cases, service users should be able to annotate their IECR if information has been omitted, or the care professional should identify when information has been diluted.

Six participants raised concerns and questions about the management of inaccurate information in the IECR, with some sharing experiences of having inaccurate information recorded in their health record. Participants asked how Jona and Riley could receive support if inaccurate information was uploaded to the IECR and who would be responsible for ensuring that the information was accurate. There were also questions about whether service users could edit inaccurate information or whether care professionals would be required to confirm the accuracy of the IECR with the service user. One participant contrasted the IECR with a referral letter, asking “what’s wrong with a referral letter that you give to the patient, and they read and say, oh, yeah, that sounds right but you missed this, or could you write it like this?” (P3050). Participants were also concerned with care professionals introducing their own subjective judgment into the IECR.

Participants thought that the accuracy and relevance of the IECR should be reviewed to ensure that historical information that is not directly relevant to their current care is not available on the IECR. Participants also thought that care professionals should discuss the accuracy and veracity of the record with the service user to identify information from previous encounters that may not present the service user’s perspective or needs (theme 3). One participant who had a challenging experience of seeking to have incorrect information in their health record updated thought that service users would lack the time and resources to engage with their IECR to address such issues.

Most participants had limited experience with EHRs. During the interviews, 8 participants identified that they had heard of an EHR, mainly Australia’s My Health Record. Of these 8 participants, 1 opted out due to the risk of stigma, 1 noted that they had limited knowledge of My Health Record, and 1 shared that their general practitioner did not upload information to their My Health Record.

Four participants noted that being able to view the IECR could benefit service users by acting as a reference point for their condition, supporting their memory, and facilitating discussions with care professionals. Participants thought that seeing what their care professionals had written would help them engage in conversations about things that they agreed with and areas where they disagreed. There was also an acknowledgment that the digital nature of the IECR could benefit some service users, especially those experiencing homelessness, as they would not have to carry paper documents with them. Some participants thought that the IECR provided an opportunity to check that what was being uploaded to the IECR was correct and would allow them to have conversations with their care professionals about issues that they may not be focusing on or to see what their care professionals thought about them.

Four participants thought that service users might require support when reading their IECR as the content could be distressing and the clinical terminology might be perceived negatively. For example, one participant thought that service users may have an experience of thinking, “is that how they really see me” (P3030).

Participants actively engaged with the vignettes and spent time considering the benefits and risks of each scenario. Many of the written answers were framed as questions about the IECR. Participants actively considered the trade-offs of different decisions that the vignettes posed, such as whether to opt in or opt out of the IECR. Although some participants were more supportive of or more against the IECR, most saw reasons why someone might opt in or out.

One way in which the case studies differed was whether the IECR had an opt-in or opt-out model. Six participants thought that it was important that service users be actively supported to make an informed choice as to whether to have an IECR. Some participants considered that service users may not have the opportunity to make an informed choice under an opt-out model, especially if they are unwell when they are required to decide whether to opt out. Participants questioned whether service users can opt in or out whenever they want and what happens to their records during periods in which they opt out.

Participants raised broad concerns regarding the privacy, confidentiality, and security of the IECR. Some participants considered that there were many unknown risks of adopting an IECR because it is hard to foresee risks that may arise in the future. Participants raised various comments and questions about the security of the IECR and what would happen in the event of a security breach, referencing that there has been a lot of online information theft recently in Australia. Participants wanted to know what support would be available to service users in the case of a security breach. There were also concerns, which were identified in other themes, of potential breaches of privacy and confidentiality through inappropriate use of and access to the IECR by care professionals. Participants considered that service users would need assurances as to the privacy and security of their IECR so that they can confidently use it without worrying about the potential risks of their data being inappropriately accessed.

Some participants thought that service users would require someone such as an advocate to explain the IECR and help them make an informed choice about how it is used. A verbal explanation was considered important as written information could be overwhelming. However, such conversations may not be appropriate for care professionals to provide given the time constraints placed on them to provide such information.

All participants identified barriers that service users might face when using their IECR. These barriers included the skills needed to manage IECR settings, the resources needed to access the IECR, and the knowledge needed to understand the IECR and the information documented in it. The lack of access to appropriate information technology may limit services users’ ability to use their IECR. Participants questioned whether training would be provided to support service users to utilise their IECR. Participants also suggested that the IECR should be easy to use. For example, password management should be simple because service users may struggle to remember passwords. Several participants questioned what support would be provided alongside the IECR to ensure that service users can use it and manage any issues arising from the IECR, such as inappropriate use by care professionals.

A couple of participants considered that service users’ symptoms may act as a barrier to using and making informed decisions about their IECR and that this would need to be considered in the design of the IECR and the support available to service users. A couple of participants considered that service users may negatively react to what is written in their IECR but that this should be managed by the care professional notifying the service user before uploading information to the IECR.

Although participants considered privacy settings an important component of the IECR, 3 questioned whether all service users would have the skills and knowledge required to use these settings. Participants thought that in-depth information and support would be required to ensure that Jona and Riley could use and understand the implications of the privacy settings of their IECR. There were questions about who Jona and Riley could contact for support and whether they could access free legal advice if there were issues or breaches with their IECR. Participants acknowledged that, in the vignette, Jona used a public computer to access his IECR, which could raise privacy risks for him.

Participants discussed how the IECR could support more collaborative and integrated care across various services. Integrating various sources of information in the IECR may also enable more proactive care by providing care professionals with a more holistic picture of service users’ needs. One participant thought that the IECR might help them prove their eligibility for other services. However, some participants questioned whether care professionals would use the record or whether they would still have to repeat their information when accessing a service.

Six participants considered that the IECR may support more collaborative care by linking the different care professionals supporting service users. It was acknowledged that the IECR may benefit services that are not usually kept informed, such as pharmacists and the NDIS.

Although some participants saw benefits in integrating their information via the IECR, 8 were also concerned about the IECR being accessed or information in the IECR being shared with too broad a range of organizations. This concern included whether noncare services such as employers, other government agencies, and the police could access the IECR. Participants also raised the concern that, depending on the policies of different organizations, providing consent for an individual might allow others within that organization to view their IECR. Different participants usually identified a different list of organizations that they were concerned would access their IECR. One participant framed organizations that should not have access as those that did not have the service user’s health as their primary focus. However, one participant considered the NDIS as an inappropriate service to be provided with access to their IECR.

Four participants thought that care professionals might be more informed about the current needs of service users, including their social needs, by having more services involved in the IECR. For example, one participant thought that, in Jona’s story, the IECR may help care professionals identify a risk of social isolation when he moved to a new suburb. Identifying this risk to Jona could prompt care professionals to support Jona in settling into his new community. Including social and community care services was viewed as important by participants because these services tend to have a long-term recovery focus and might see more of the service user over their recovery journey. Participants also identified that bringing together different services on the IECR could support the identification of inconsistencies, inadequacies, or overlaps in care that could, in turn, improve the effectiveness and adequacy of care. Some participants also thought that the IECR might help care professionals link the dots between different pieces of information to identify patterns or other factors, such as socioeconomic factors, that might contribute to their mental health.

Providing a broader range of care professionals with access to the IECR was also viewed as supporting holistic care. For example, one participant thought that having their housing risk assessment and diabetes information in the IECR could better inform other care professionals of their needs.

Nine participants discussed how the IECR could help bring service users’ story together in one place to minimize the need to unnecessarily retell it when accessing new services. Participants thought that the IECR may also make transitions between services easier and provide care professionals with a picture of service users’ current needs. Some participants noted that service users need to share a lot of information just to be prioritized when accessing a service, but at the same time, some of this information can be challenging to share. With the appropriate controls in place, the IECR could support service users in sharing their story, and as one participant put it, make sure that it is “translated to clinical speak.” The IECR could also act as proof for the service user when sharing information with new care professionals. Participants discussed that, when they are acutely unwell, it can be challenging to remember information and put it in words that care professionals will understand. However, as was outlined in previous themes, there is a balance between the benefits of not having to retell the story and having the IECR override the service user’s voice. Some participants were also concerned that care professionals would not read the IECR and they would still be required to retell their story.

This study sought to explore mental health service users’ perspectives on an IECR. The results suggest that service users want to feel empowered to shape the content of their IECR and how it is used. However, participants were concerned that the IECR would likely be used to privilege the perspectives of care professionals, especially if service users were not supported to use their IECR. Participants thought that an IECR could bring together a comprehensive picture of their needs and support more collaborative and proactive care. However, there was also the risk that inaccurate and out-of-date information would overshadow the actual needs of service users or that care professionals would prejudge them based on the information in their IECR. The concept of relevance, including relevant care professionals accessing the IECR and relevant information being uploaded to the IECR, was central to participants’ views on how the IECR should be used. The findings of this study provide insights into how IECRs and EHRs should be designed for use in the mental health care context.

There were some contradictions in the findings of this study. For example, participants wanted the IECR to minimize the need for them to retell their story while also not wanting to lose control of how their story is told. Similarly, participants only wanted relevant information in the IECR but were concerned about gaps in their record. One way to understand these contradictions is in the context of Australia’s mental health care system, where there is an entrenched power imbalance between service users and the mental health care system that contributes to the disadvantage and marginalization of people with mental health conditions [43,44]. Our findings suggest that participants are concerned that an IECR might entrench many of these existing issues in the mental health care system. In the ideal care system, service users might feel confident relying on an IECR as a complete record of their story. However, in the current mental health care system, the risk of judgment, stigma, poor treatment, and a lack of service user control over their care may underpin a lack of trust in how an IECR would be used.

Participants were concerned that the IECR would entrench experiences of stigma and discrimination. This finding is not unexpected given the evidence that people with mental health diagnoses experience stigma and discrimination across various health care settings [45,46]. Stigma operates at different levels in the mental health care system, including the structural (eg, discriminatory policy and social structures), interpersonal (eg, prejudice and misinformation), and intrapersonal (eg, negative beliefs about the self) levels [45,47]. Henderson et al [45], in reviewing the evidence on stigma in mental health care settings, found that research has focused on interpersonal stigma, with less consideration being given to how structural stigma may shape interpersonal stigma. There could be an opportunity in the design of EHRs to manage structural stigma by shaping how organizations collect and manage stigmatizing information, which contributes to interpersonal stigma. Addressing stigma is important as it can act as a barrier to help seeking [48]. Grando et al [49] found that stigma was a key reason mental health service users might not consent for care professionals to access their EHR. Service users also anticipate stigma based on their past experiences, which may shape how they interact with care professionals and the information they disclose [46,50]. Some participants in this study anticipated, based on their previous experiences, that the IECR could further entrench stigma and discrimination and that stigmatizing information may follow them via their IECR.

Participants did not support the IECR being a comprehensive record but rather valued a record that could provide relevant information to relevant care professionals to support their current care needs. This focus on relevance was framed as ensuring that the information available could be used by care professionals to improve their care. This finding supports previous research by Shen et al [3], who, in interviewing mental health service users about their privacy perspectives, found that they were supportive of health information exchange when it would contribute to better care. This finding also reflects modern theories of privacy, such as the theory of privacy as contextual integrity by Nissenbaum [51], which situates people’s experiences of privacy within specific contexts. Nissenbaum [51] frames privacy as the appropriate flow of information in a specific context. Thus, some information may not raise privacy concerns when shared in some care contexts, but in others, it may be seen as inappropriate. Thus, the context in which the IECR is used will shape what service users may define as relevant to be shared.

These findings also challenge the purpose of the health record. Historically, the health record was a record of the care that someone received, usually within one specific health care setting [9]. Although EHRs are regularly framed as “digitizing” the health care record [52], EHRs introduce fundamentally different information-sharing practices compared to paper health records [25,53]. Currently, if information is shared between services, it is done via a letter, phone call, specific shared care plan, or the service user. In all these cases, the information shared is curated for a specific point in time, for a specific receiver, and usually as an outcome of the service user engaging with a service [53]. This approach to information sharing has been described as “pushing information” to other services [53,54]. In the case of the IECR or Australia’s My Health Record, information is “pulled” out of a repository with limited curation by another care professional or the service user for that specific receiver [53,54]. There is a risk that an IECR would become unwieldy due to the amount of information stored in it, which risks becoming quickly out-of-date or irrelevant. It may be more appropriate for an IECR to operate similarly to a shared care plan, which is designed to be used in team-based care for a particular condition and include information relevant to the team and the care they are providing [55].

A comprehensive IECR may also breach modern privacy principles such as data minimization and privacy by design. Privacy by design asserts that the minimum necessary information should be collected for a specific purpose [56]. The challenge with IECRs, as articulated in this study, is defining what is useful or relevant at the point of collection in a complex care system in which the next step in someone’s care journey is not always clear. The risk of an IECR is that it goes in the opposite direction of data minimization toward data maximization, which poses practical issues for care professionals trying to find relevant information and privacy issues for service users. Even when EHRs allow service users to place access controls on parts of their record, this may not be feasible when there are large amounts of content in the record.

Only some participants in this study raised the issue of how sensitive information is managed. Other studies have found more explicit views on the management of sensitive information. Soni et al [57], in a mixed methods study with behavioral health patients, found that most (76%) participants considered mental health information sensitive and 24% feared stigma and discrimination in relation to their mental health. Participants also reported wanting to restrict the sharing of mental health information in the EHR. Similarly, a survey study by Soni et al [58] found that participants were less willing to share information that they perceived as sensitive. Mental health information was considered the most sensitive, and many participants wanted to restrict access to some or all of this information by care professionals. This study does highlight that service users consider information collected about them during involuntary inpatient treatment as requiring careful consideration before it is made available to other care professionals.

Consent was a key issue raised by participants, who thought it was important for informed consent to be required before care professionals can access their IECR. However, there are questions as to how consent is managed in cases of involuntary treatment, where service users are deemed to lack the capacity to make decisions about their care. Participants were concerned with how an IECR would be used in such cases and generally were against the IECR being used in involuntary inpatient care. There is growing research on the use of dynamic consent mechanisms and psychiatric advance care plans that would provide service users with the ability to predetermine their preferences for care when they may be assessed to lack capacity [59]. However, research on psychiatric advance care plans has found low completion rates due to barriers such as service users not understanding the advance care plan, the complexity of completing the forms, and skepticism about their benefit [60,61]. Similarly, care professionals report barriers to using advance care plans due to a lack of access to and time to review documents in a crisis and a lack of training [61]. Research on advance care planning has questioned their ability to improve care when the processes required to establish and use an advance care plan rarely align with the realities of clinical practice [62]. There is a broader question as to whether service users should lose their ability to make decisions about their IECR in inpatient settings. There is recent evidence suggesting that most service users with psychiatric conditions in inpatient care have the capacity to make complex and important decisions about their care [63].

Participants also wanted control over what information certain care professionals could access. Given the findings of this study and others [64], it appears that service users would likely want to hide information that they perceive as sensitive or irrelevant to their care. However, Schwartz et al [65], in a study of how service users manage the privacy functions of their EHR, found that most service users who chose to limit access to their EHR chose to limit access to the entire EHR. This finding may be due to the effort required to restrict access to certain types of information [65]. Further research is required to understand how service users make decisions to use privacy controls and approaches to supporting them in managing their IECR. One approach to addressing this issue is through identifying sensitive information upfront when information is documented and allowing service users to preset conditions for when sensitive information can be accessed. For example, Chivilgina et al [66] found in a qualitative study with psychiatric service users that they wanted care professionals to obtain purpose-related informed consent when documenting sensitive information in their EHR.

Participants thought that it was important that service users’ perspectives were captured in the IECR. However, there were concerns that service users may not have the resources and time to independently add information to their IECR. Approaches such as collaborative documentation may facilitate care professionals working with service users to agree on what should be documented in the IECR [67]. However, the design of EHRs may also actively limit care professionals’ ability to capture service users’ stories and perspectives. One of the proposed benefits of EHRs is that they improve data quality and enable the collection of structured and standardized data that can be used for other purposes, such as research. Our previous research [25] and that by Varpio et al [68] have found that EHRs that require structured data entry can limit the capturing of narrative information, which may include service user perspectives. Furthermore, Rathert et al [26], in reviewing the literature on EHRs, found that they may limit the documentation of psychosocial and emotional information. Finding ways to capture, share, and use narrative data appears key to ensuring that service users’ voices are considered in care encounters when using an IECR.

Participants questioned the level of support that service users would be provided with to access and manage their IECR. There were concerns that service users, including the fictional characters in the vignettes, would lack the skills and knowledge to make informed choices about their IECR. Ensuring the usability of EHRs is an ongoing issue in Australia, with research identifying gaps in the usability of My Health Record, including the educational resources available for service users, which may negatively impact those with low health literacy [69-71]. A notable finding in this study was the importance that participants placed on having support to engage with the privacy functions of the IECR. While existing literature has focused on the availability of privacy functions in EHRs [58,72], participants in this study highlighted the importance of having skills and capabilities to manage these functions, as well as support pathways outside the IECR to address privacy issues.

In presenting participants with the concept of an IECR, we purposefully expanded the potential array of care services that could contribute to the health record, which in turn may expand the types of information available. There is growing research on the inclusion of social and behavioral data in health records, with some researchers positing that such information provides broader context to tailor interventions and clinical decisions [73,74]. One of the challenges that has been identified in collecting such information is that service users may perceive it as sensitive and, therefore, not disclose it [75]. Where care professionals record this information, there is a risk that service users may perceive this negatively, especially if the information is viewed as a pejorative assessment of them, such as assessments of their income. What this study found is that service users perceive such information as enabling more proactive care but are concerned as to how broadly their IECR might be shared. This aligns with suggestions in the literature that service users should be engaged as partners in the process of collecting such information, with transparency over how it will be collected and shared [75].

The findings suggest that qualitative vignettes are a feasible approach to exploring service users’ perspectives on digital health technologies that they have not yet experienced. One potential avenue for future research using this methodology includes exploring story completion methods alongside vignettes to encourage participants to explore ways in which the vignettes might evolve based on different responses to the scenarios [76].