Published on in Vol 27 (2025)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/54973, first published .
Patient-Accessible Electronic Health Records and Information Practices in Mental Health Care Contexts: Scoping Review

Patient-Accessible Electronic Health Records and Information Practices in Mental Health Care Contexts: Scoping Review

Patient-Accessible Electronic Health Records and Information Practices in Mental Health Care Contexts: Scoping Review

Review

1Faculty of Engineering and Information Technology, University of Melbourne, Carlton, Australia

2Melbourne Law School, University of Melbourne, Melbourne, Australia

3Centre for Digital Transformation of Health, University of Melbourne, Melbourne, Australia

Corresponding Author:

Timothy Kariotis, BA, BSocSc, BNutrSc, MPH, MBA, MHCM

Faculty of Engineering and Information Technology

University of Melbourne

700 Swanston Street

Carlton, 3053

Australia

Phone: 61 488300223

Email: Timothy.kariotis@unimelb.edu.au


Background: Patients are increasingly being provided with access to their electronic health records. However, in mental health care contexts, concerns have been raised due to a perception that such access would pose risks to patients, third parties, and the therapeutic relationship. These perceived risks may affect the information practices of health care professionals (HCPs) and patients, such as how they document, share, and use information in mental health care services with a patient-accessible electronic health record (PAEHR). Although there is growing research interest in PAEHRs, no study has specifically examined how they impact information practices. Understanding the impacts on information practices may help explain other outcomes of implementing PAEHRs and inform their design.

Objective: This scoping review aimed to explore the research on PAEHRs in mental health care contexts and how PAEHRs affect information practices of HCPs and patients in this context.

Methods: A scoping review was considered the most appropriate method due to the relatively recent adoption of PAEHRs in mental health care contexts and the heterogeneous nature of the evidence base. A comprehensive search of electronic databases was conducted for original empirical studies that described the use of PAEHRs or associated systems in mental health care contexts. One author reviewed all full texts, with 3 other authors reviewing a subset of studies. The study characteristics and findings were documented, and a thematic synthesis and textual narrative analysis were used to develop descriptive and analytical themes that addressed the research questions.

Results: A total of 66 studies were considered eligible and included in the analysis. The impact of PAEHRs on information practices in mental health care contexts included the following: (1) they may change how HCPs document patient information, including a reduction in detail and a focus on information perceived by HCPs as objective rather than subjective; (2) they may negatively impact workflows due to changes in documentation practices and limited guidance for HCPs on how to use PAEHRs; and (3) they may contribute to improved communication between HCPs and patients, including constructive disagreements regarding what is documented in the health record. The changes to HCP information practices were influenced by a concern for the therapeutic relationship and patient safety. Furthermore, PAEHRs supported new information practices for patients, such as using their PAEHR to prepare for clinical encounters.

Conclusions: We have identified several ways in which PAEHRs shape the information practices of HCPs and patients in the mental health context. These findings can inform the design of PAEHRs to promote information practices that contribute to improving the quality of mental health care. Further research is necessary to understand how changes in information practices due to the implementation of PAEHRs impact clinical outcomes and patient experiences of care.

J Med Internet Res 2025;27:e54973

doi:10.2196/54973

Keywords



Background

Patients in many high-income countries, such as Australia, the United States, the United Kingdom, France, and the Netherlands, have a legal right to request access to their health records [Tavakoli N, Isfahani SS, Piri Z, Amini A. Patient access to electronic health record: a comparative study on laws, policies and procedures in selected countries. Med Arch. 2013;67(1):63-67. [CrossRef] [Medline]1,Essén A, Scandurra I, Gerrits R, Humphrey G, Johansen MA, Kierkegaard P, et al. Patient access to electronic health records: differences across ten countries. Health Policy Technol. Mar 2018;7(1):44-56. [CrossRef]2]. Traditionally, patients have had to apply for a copy of their paper-based health records, which can hinder easy access and efficient use of their health information [Ross SE, Lin CT. The effects of promoting patient access to medical records: a review. J Am Med Inform Assoc. 2003;10(2):129-138. [FREE Full text] [CrossRef] [Medline]3]. There is a growing movement to make it easier for patients to access their health information by providing electronic access to their health records. This shift toward online access has been enabled by the widespread adoption of electronic health records (EHRs) [Essén A, Scandurra I, Gerrits R, Humphrey G, Johansen MA, Kierkegaard P, et al. Patient access to electronic health records: differences across ten countries. Health Policy Technol. Mar 2018;7(1):44-56. [CrossRef]2,Caligtan CA, Dykes PC. Electronic health records and personal health records. Semin Oncol Nurs. Aug 2011;27(3):218-228. [CrossRef] [Medline]4].

Providing patients with access to their health records can improve their disease management, self-care, and understanding of their health conditions [Esch T, Mejilla R, Anselmo M, Podtschaske B, Delbanco T, Walker J. Engaging patients through open notes: an evaluation using mixed methods. BMJ Open. Jan 29, 2016;6(1):e010034. [FREE Full text] [CrossRef] [Medline]5], while facilitating more productive discussions between health care professional (HCPs) and patients [Esch T, Mejilla R, Anselmo M, Podtschaske B, Delbanco T, Walker J. Engaging patients through open notes: an evaluation using mixed methods. BMJ Open. Jan 29, 2016;6(1):e010034. [FREE Full text] [CrossRef] [Medline]5-Pagliari C, Detmer D, Singleton P. Potential of electronic personal health records. BMJ. Aug 18, 2007;335(7615):330-333. [FREE Full text] [CrossRef] [Medline]7]. Mental health care contexts have been slower to adopt patient-accessible EHRs (PAEHRs), and in some cases limitations have been placed on patients with mental health conditions accessing their PAEHR [Kahn MW, Bell SK, Walker J, Delbanco T. A piece of my mind. Let's show patients their mental health records. JAMA. Apr 02, 2014;311(13):1291-1292. [CrossRef] [Medline]8-Onyeaka H, Ajayi KV, Muoghalu C, Eseaton PO, Azuike CO, Anugwom G, et al. Access to online patient portals among individuals with depression and anxiety. Psychiatry Res Commun. Dec 2022;2(4):100073. [FREE Full text] [CrossRef]12]. There are various concerns regarding the use of PAEHRs in mental health care contexts, including the impact on third parties, such as relatives whose information may be documented in the record and the risk that patients will experience distress from reading their PAEHR [Laugharne R, Stafford A. Access to records and client held records for people with mental illness. Psychiatr Bull. Jan 02, 2018;20(6):338-341. [FREE Full text] [CrossRef]11,O'Neill S, Blease C, Delbanco T. Open notes become law: a challenge for mental health practice. Psychiatr Serv. Jul 01, 2021;72(7):750-751. [CrossRef] [Medline]13].

The digitalization of patient health records has impacted the information practices of HCPs and patients, changing the way they seek, document, and share information [Clavier V, Paganelli C. Knowledge organization and studies of information practices: contribution to the characterization of health information. In: Paganelli C, Clavier V, editors. Information Practices and Knowledge in Health. Hoboken, NJ. John Wiley & Sons; 2022. 14]. We use the concept of information practices to capture how information activities, such as documentation, are situated in and shaped by specific contexts [Kariotis TC, Prictor M, Chang S, Gray K. Impact of electronic health records on information practices in mental health contexts: scoping review. J Med Internet Res. May 04, 2022;24(5):e30405. [FREE Full text] [CrossRef] [Medline]15]. Østensen et al [Østensen E, Bragstad LK, Hardiker NR, Hellesø R. Nurses' information practice in municipal health care-a web-like landscape. J Clin Nurs. Jul 23, 2019;28(13-14):2706-2716. [CrossRef] [Medline]16] defined information practice as “a socially constructed practice that determines how information is produced, organized, disseminated, distributed, reproduced and circulated in the community, and which specific types of information are legitimized.” The concept of information practice is used in this study because it encourages consideration of factors unique to mental health care contexts, such as stigma and risk management, which may shape HCPs’ and patients’ information activities [Langan J. Mental health, risk communication and data quality in the electronic age. Br J Soc Work. 2009;39(3):467-487. [FREE Full text] [CrossRef]17,Grando MA, Murcko A, Mahankali S, Saks M, Zent M, Chern D, et al. A study to elicit behavioral health patients' and providers' opinions on health records consent. J Law Med Ethics. Jun 14, 2017;45(2):238-259. [FREE Full text] [CrossRef] [Medline]18].

Several technologies are available to provide patients with access to parts or all of their health record, including electronic personal health records (ePHRs) and patient portals. A range of initiatives, such as OpenNotes and Blue Button, implemented predominantly in the United States and across several Nordic countries, have promoted immediate patient access to their EHRs via patient portals [Mohsen MO, Aziz HA. The blue button project: engaging patients in healthcare by a click of a button. Perspect Health Inf Manag. 2015;12(Spring):1d. [FREE Full text] [Medline]19-Blease C, Salmi L, Rexhepi H, Hägglund M, DesRoches CM. Patients, clinicians and open notes: information blocking as a case of epistemic injustice. J Med Ethics. May 14, 2021;48(10):785-793. [FREE Full text] [CrossRef] [Medline]21]. Both personal EHRs (pEHRs) and patient portals can be defined in comparison to EHRs, which are the digital clinical records held by a health service and accessible only by HCPs [Häyrinen K, Saranto K, Nykänen P. Definition, structure, content, use and impacts of electronic health records: a review of the research literature. Int J Med Inform. May 2008;77(5):291-304. [CrossRef] [Medline]22,Garets D, David M. Electronic medical records vs. electronic health records: yes, there is a difference. HIMSS Analytics. Jan 26, 2006. URL: https://www.aao.org/asset.axd?id=8e9b1f20-0ed6-4d2b-92f8-e28fbaf378ec&t=634962799822530000 [accessed 2023-10-29] 23]. Patient portals provide patients with access to some parts of the EHR and a range of other functions, such as booking appointments [Zhang T, Shen N, Booth R, LaChance J, Jackson B, Strudwick G. Supporting the use of patient portals in mental health settings: a scoping review. Inform Health Soc Care. Jan 02, 2022;47(1):62-79. [CrossRef] [Medline]24]. In comparison, pEHRs are health records controlled by the patient, which may be linked to an EHR or stand-alone entities [Archer N, Fevrier-Thomas U, Lokker C, McKibbon KA, Straus SE. Personal health records: a scoping review. J Am Med Inform Assoc. 2011;18(4):515-522. [FREE Full text] [CrossRef] [Medline]25]. pEHRs may include a range of functions, such as capturing patient-generated data, such as biometric data from wearable devices, and providing access to educational material [Harahap NC, Handayani PW, Hidayanto AN. Functionalities and issues in the implementation of personal health records: systematic review. J Med Internet Res. Jul 21, 2021;23(7):e26236. [FREE Full text] [CrossRef] [Medline]26,Jung SY, Kim JW, Hwang H, Lee K, Baek RM, Lee HY, et al. Development of comprehensive personal health records integrating patient-generated health data directly from Samsung s-health and Apple health apps: retrospective cross-sectional observational study. JMIR Mhealth Uhealth. May 28, 2019;7(5):e12691. [FREE Full text] [CrossRef] [Medline]27]. Beyond these simple definitions, there is substantial heterogeneity in the types, functions, architecture, and content of pEHRs and patient portals [Harahap NC, Handayani PW, Hidayanto AN. Functionalities and issues in the implementation of personal health records: systematic review. J Med Internet Res. Jul 21, 2021;23(7):e26236. [FREE Full text] [CrossRef] [Medline]26,Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ. Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc. 2006;13(2):121-126. [FREE Full text] [CrossRef] [Medline]28]. In this paper, because the focus is on patients’ online access to their health records, we use the term PAEHRs. This term captures the range of technologies that give people complete or partial access to the information contained in their EHR. Other terms may be mentioned in this paper when referring to results from specific studies.

Several recent reviews have explored the use of PAEHRs [Carini E, Villani L, Pezzullo AM, Gentili A, Barbara A, Ricciardi W, et al. The impact of digital patient portals on health outcomes, system efficiency, and patient attitudes: updated systematic literature review. J Med Internet Res. Sep 08, 2021;23(9):e26189. [FREE Full text] [CrossRef] [Medline]29-Benjamins J, Haveman-Nies A, Gunnink M, Goudkuil A, de Vet E. How the use of a patient-accessible health record contributes to patient-centered care: scoping review. J Med Internet Res. Jan 11, 2021;23(1):e17655. [FREE Full text] [CrossRef] [Medline]32], with 2 specifically in mental health contexts [Schwarz J, Bärkås A, Blease C, Collins L, Hägglund M, Markham S, et al. Sharing clinical notes and electronic health records with people affected by mental health conditions: scoping review. JMIR Ment Health. Dec 14, 2021;8(12):e34170. [FREE Full text] [CrossRef] [Medline]9,Zhang T, Shen N, Booth R, LaChance J, Jackson B, Strudwick G. Supporting the use of patient portals in mental health settings: a scoping review. Inform Health Soc Care. Jan 02, 2022;47(1):62-79. [CrossRef] [Medline]24]. However, these studies have not considered the impact of PAEHRs on information practices and have usually focused solely on patient portals. Zhang et al [Zhang T, Shen N, Booth R, LaChance J, Jackson B, Strudwick G. Supporting the use of patient portals in mental health settings: a scoping review. Inform Health Soc Care. Jan 02, 2022;47(1):62-79. [CrossRef] [Medline]24] found that the factors for successful implementation and adoption of patient portals in mental health care contexts include education for patients, the perceived value of the portal by patients, how easy it was for patients to use the portal, attitudes of HCPs toward using the portal, and adequate staffing and staff training to support the use of the portal. Schwarz et al [Schwarz J, Bärkås A, Blease C, Collins L, Hägglund M, Markham S, et al. Sharing clinical notes and electronic health records with people affected by mental health conditions: scoping review. JMIR Ment Health. Dec 14, 2021;8(12):e34170. [FREE Full text] [CrossRef] [Medline]9] found that patients reported various positive experiences of using patient portals, such as increased empowerment and trust in clinicians, while negative experiences were related to inaccuracies in their records or disrespectful language. HCPs reported more concerns than benefits, including increased documentation burden and possible harm from patients reading their records. These studies reflect the growing prevalence and interest in PAEHRs in mental health care contexts. However, research is needed to consider the impact of PAEHRs on information practices because changes to information practices, such as HCPs documenting less information, may impact the quality and safety of care provided in mental health care settings.

This paper builds on our previous scoping review where we found that EHRs promote standardized and formalized documentation practices that often conflict with the prevalent use of narrative free-text information in mental health care settings [Kariotis TC, Prictor M, Chang S, Gray K. Impact of electronic health records on information practices in mental health contexts: scoping review. J Med Internet Res. May 04, 2022;24(5):e30405. [FREE Full text] [CrossRef] [Medline]15]. The review also found that HCPs had concerns about documenting sensitive information in EHRs due to the increased ease of access by other HCPs [Kariotis TC, Prictor M, Chang S, Gray K. Impact of electronic health records on information practices in mental health contexts: scoping review. J Med Internet Res. May 04, 2022;24(5):e30405. [FREE Full text] [CrossRef] [Medline]15]. The previous scoping review suggests that changing what is documented, how it is documented, and who can access information in the health record may alter clinicians’ information practices. Other studies have found that adopting EHRs affects patients’ intention to disclose certain information [DePuccio MJ, Di Tosto G, Walker DM, McAlearney AS. Patients' perceptions about medical record privacy and security: implications for withholding of information during the COVID-19 pandemic. J Gen Intern Med. Oct 2020;35(10):3122-3125. [FREE Full text] [CrossRef] [Medline]33,Cherif E, Mzoughi M. Electronic health record adopters: a typology based on patients' privacy concerns and perceived benefits. Public Health. Jun 2022;207:46-53. [CrossRef] [Medline]34]. Thus, it could be assumed that the introduction of PAEHRs may impact HCPs’ and patients’ information practices.

This review has the following objectives and research questions:

  1. How do PAEHRs change the information practices of patients and HCPs in mental health care contexts?
  2. What effects do changes in information practices have on other aspects of care, including the therapeutic relationship, risk management, information sharing, and patient experience?

A Note on Language

In this study, we used the term patient when referring to people accessing and using mental health services. We chose this over other terms, such as client or service user, mainly because many of the PAEHR technologies reference “patients” in their name (eg, patient portal), and we wanted to avoid causing confusion by using another term. We acknowledge that the term patient can be considered disempowering and that the terminology in this space is not settled.

The title of this paper refers to mental health care contexts, which is used to capture the broad range of clinical and nonclinical services people may access when experiencing mental health issues [Lee SJ, Crowther E, Keating C, Kulkarni J. What is needed to deliver collaborative care to address comorbidity more effectively for adults with a severe mental illness? Aust N Z J Psychiatry. Apr 2013;47(4):333-346. [CrossRef] [Medline]35].


Overview

Scoping reviews facilitate consideration of a broad range of evidence, methods, and study types in relatively new or heterogeneous research fields [Arksey H, O'Malley L. Scoping studies: towards a methodological framework. International Journal of Social Research Methodology. Feb 2005;8(1):19-32. [CrossRef]36]. Because PAEHRs in mental health care contexts are relatively new and information practices have received limited consideration in the literature, we considered a scoping review an appropriate method to address the research objectives [Durocher K, Shin HD, Lo B, Chen S, Ma C, Strudwick G. Understanding the role of patient portals in fostering interprofessional collaboration within mental health care settings: mixed methods study. JMIR Hum Factors. Jul 19, 2023;10:e44747. [FREE Full text] [CrossRef] [Medline]37,Cromer R, Denneson LM, Pisciotta M, Williams H, Woods S, Dobscha SK. Trust in mental health clinicians among patients who access clinical notes online. Psychiatr Serv. May 01, 2017;68(5):520-523. [FREE Full text] [CrossRef] [Medline]38]. We were informed by the framework for scoping reviews by Arksey and O’Malley [Arksey H, O'Malley L. Scoping studies: towards a methodological framework. International Journal of Social Research Methodology. Feb 2005;8(1):19-32. [CrossRef]36] and the relevant criteria outlined in the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist (

Multimedia Appendix 1

PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist.

DOCX File , 109 KBMultimedia Appendix 1) [Tricco AC, Lillie E, Zarin W, O'Brien KK, Colquhoun H, Levac D, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann Intern Med. Oct 02, 2018;169(7):467-473. [FREE Full text] [CrossRef] [Medline]39]. No protocol was published for this review.

Study Selection

The inclusion and exclusion criteria are outlined in Textbox 1. We chose to include soon-to-be-implemented PAEHRs, which we defined as systems that had been announced or were planned for implementation, for 3 reasons. First, if we were to publish an updated review, it would provide us with the opportunity to compare pre- and postimplementation studies. Second, perceptions of a PAEHR may influence practices as much as using a PAEHR [Tubaishat A. Perceived usefulness and perceived ease of use of electronic health records among nurses: application of Technology Acceptance Model. Inform Health Soc Care. Dec 18, 2018;43(4):379-389. [CrossRef] [Medline]40,Morris MG, Dillon A. How user perceptions influence software use. IEEE Softw. 1997;14(4):58-65. [CrossRef]41]. Third, in our initial reading of the literature, we noticed that often PAEHRs had low use by HCPs or had only been recently implemented. Thus, there may be little difference between perceptions in the lead-up to implementation and perceptions after implementation if the PAEHR has not been widely used.

Textbox 1. Inclusion and exclusion criteria.

Inclusion criteria

  • Articles describing original empirical research
  • Research conducted in a mental health care context (eg, psychiatric hospital) or with participants who have a lived experience of mental illness (eg, patients in a primary health care context with a diagnosis of depression)
  • Studies published up to September 2023
  • Studies focused on the implementation of a system for allowing patients with mental health conditions to access their health record or about the perception of an imminent implementation of such a system or studies that sought input from people with involvement in the design, adoption, use, or evaluations of patient-accessible electronic health records

Exclusion criteria

  • Studies with no methodology
  • Studies with no full text in English
  • Protocol papers, commentaries, or posters
  • Studies exploring health care professionals’ or patients’ general perceptions about access to online mental health records
  • Studies where the participants are children or adolescents, or the study is conducted in the youth mental health system
  • Studies conducted in forensic mental health care settings
  • Scoping reviews or systematic reviews

Search Strategy

We searched Scopus, Embase, Web of Science, MEDLINE via PubMed, PsycINFO, and CINAHL using a combination of key terms summarized in Textbox 2. A search was also conducted on Google and ResearchGate. The search strategy was developed iteratively alongside further identification of key terms in the literature and hand searching reference lists of relevant studies. The initial search was undertaken in late 2018 and updated in December 2022, with new papers continually identified until September 2023, when the final draft was completed.

Textbox 2. Example search strategy used in Scopus.

(TITLE-ABS-KEY (“patient portal” OR “open*notes” OR “personal electronic record” OR “personal electronic health record” OR “personal electronic medical record” OR “personal medical record” OR “personal health record” OR “pEHR” OR “pEMR” OR “patient*controlled personal health records” OR “shared medical record” OR “patient controlled record” OR “patient*held medical record” OR “patient*controlled journal” OR “patient*controlled electronic health record” OR “blue button” OR “health record portal” OR “consumer portal” OR “patient access to health record” OR “PHR” OR “ePHR” OR “patient accessible record” OR “patient*shared record” OR “patient*carried record” OR “patient*held record” OR “patient internet portal” OR “patient accessible electronic health record” OR “patient access to record”) AND TITLE-ABS-KEY (“psychiatr*” OR “mental illness” OR “mental health” OR “mental health services” OR “behavioral health*” OR “mental healthcare” OR “mental health care” OR “mental health nurs*” OR “schizophrenia” OR “bipolar” OR “depression” OR “anxiety” OR “personality disorder” OR “psychosocial”))

Screening Process

After removing duplicates, TK screened the titles and abstracts against the inclusion criteria to identify relevant studies for full-text screening. TK reviewed all full-text articles using the inclusion and exclusion criteria. TK identified 23% (15/66) of the studies for which it was unclear whether they met the inclusion criteria. The other 3 authors (MP, KG, and SC) each reviewed one-third (5/15, 33%) of these studies to determine whether they should be included. The authors worked together to resolve disagreements and determine the final articles for inclusion in the review. There were a few disagreements regarding studies in which the use of the PAEHR was minimal, as it was part of a larger study or intervention. Furthermore, 23% (15/66) of the studies that did not clearly meet the inclusion criteria were included after a discussion between the authors.

Analysis of Included Studies

Due to the breadth of the study designs and objectives, covering a range of qualitative and quantitative methods, we adopted a textual narrative and thematic synthesis approach, as has been done in similar studies [Kariotis TC, Prictor M, Chang S, Gray K. Impact of electronic health records on information practices in mental health contexts: scoping review. J Med Internet Res. May 04, 2022;24(5):e30405. [FREE Full text] [CrossRef] [Medline]15,Lakshman R, Ogilvie D, Ong KK. Mothers' experiences of bottle-feeding: a systematic review of qualitative and quantitative studies. Arch Dis Child. Aug 2009;94(8):596-601. [FREE Full text] [CrossRef] [Medline]42,Sartain SA, Stressing S, Prieto J. Patients' views on the effectiveness of patient-held records: a systematic review and thematic synthesis of qualitative studies. Health Expect. Dec 2015;18(6):2666-2677. [FREE Full text] [CrossRef] [Medline]43]. The textual analysis involved tabulating study findings alongside study characteristics and conclusions in a spreadsheet. The study characteristics we planned to document included the country where the study took place, year of publication, study design and method, participant characteristics, research focus, type of PAEHR, implementation status, and functions of the PAEHR. TK extracted these data from each paper into a spreadsheet, which was discussed with the research team to ensure its completeness.

Using the thematic synthesis approach described by Thomas and Harden [Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. Jul 10, 2008;8:45. [FREE Full text] [CrossRef] [Medline]44], we developed descriptive themes by coding both direct participant quotes and researcher interpretations from the qualitative studies into a mind map. Our research questions framed this coding process, in that we coded findings related to how HCPs and patients used the PAEHR to manage information, how the PAEHR changed how HCPs and patients managed information, and findings related to issues raised in the Introduction section of this paper. Related codes were clustered together to develop descriptive themes. We intended these descriptive themes to stay as close to the original findings as possible. We integrated the quantitative data extracted during the textual synthesis into the descriptive themes. Finally, using our review questions, we developed analytical themes that sought to consider the impact of the PAEHRs on the information practices of HCPs and patients. This process is necessarily subjective and relied on the researchers’ judgment and insights [Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. Jul 10, 2008;8:45. [FREE Full text] [CrossRef] [Medline]44,Barnett-Page E, Thomas J. Methods for the synthesis of qualitative research: a critical review. BMC Med Res Methodol. Aug 11, 2009;9:59. [FREE Full text] [CrossRef] [Medline]45]. To ensure the validity of the themes, TK undertook the initial descriptive analysis before seeking feedback from the research team to ensure the themes aligned with their understanding of the included studies and research questions. Similarly, TK developed the analytical themes before seeking feedback from the research team.


Overview

The search strategy identified 1713 studies. Another 24 studies were identified through hand searching and other sources, including Google and ResearchGate. After removing duplicates, of the 1737 studies, 54.92% (n=954) were identified for screening. After screening the titles and abstracts, of the 954 studies, 11.2% (n=107) met the inclusion criteria. Of the 107 articles reviewed in the full text, 38.3% (n=41) were excluded, and 61.7% (n=66) were included (Figure 1). Details of the included studies are outlined in

Multimedia Appendix 2

Details of the included studies.

DOCX File , 37 KBMultimedia Appendix 2.

Figure 1. PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) diagram. PAEHR: patient-accessible electronic health record.

Study Characteristics

The following sections report on the characteristics of the included studies that were identified in the textual synthesis.

Country

The top 3 countries where the studies were conducted were the United States (29/66, 44%), Canada (13/66, 20%), and Sweden (9/66, 14%). Table 1 provides a more detailed breakdown of the countries where the included studies were conducted. The main difference across countries was whether there was a national patient portal system, such as in Sweden, compared to a patient portal implemented across a specific service or set of services, such as the US Veterans Affairs My HealtheVet.

Table 1. Countries where the studies were conducted (N=66).
CountriesStudies, n (%)
United States29 (44)
Canada13 (20)
Sweden9 (14)
Norway4 (6)
The Netherlands2 (3)
United Kingdom3 (5)
Germany2 (3)
New Zealand1 (2)
Multiple countries3 (5)
Year of Publication

The included studies were published in the period from 2009 to 2023 (the cutoff year for inclusion). The highest number of studies was published in 2018 (11/66, 17%), followed by 2019 (10/66, 15%) and 2022 (10/66, 15%). There is an overall upward trend of studies published on PAEHRs in mental health care contexts since 2009, with some fluctuations in recent years, as illustrated in Figure 2. Due to the varied level of detail reported in the included studies on the functions and technical features of the PAEHRs, we did not evaluate how PAEHRs have changed over time.

Figure 2. Increasing trend in publications on patient-accessible electronic health records in mental health care contexts.
Study Design and Method

There was a mix of quantitative (29/66, 44%), qualitative (22/66, 33%), and mixed methods (15/66, 23%) approaches used in the included studies (Table 2). The main methods used were surveys (27/66, 41%), interviews (18/66, 27%), and interventions or trials involving a PAEHR (13/66, 20%).

Table 2. Study design and method (N=66).
Designs and methodsStudies, n (%)
Study design

Quantitative29 (44)

Qualitative22 (33)

Mixed methods15 (23)
Research methodsa

Survey27 (41)

Interview18 (27)

Focus group7 (11)

Interventions or trials involving a PAEHRb (eg, randomized controlled trials)c13 (20)

Secondary data analysis7 (11)

Design2 (3)

Observation1 (2)

Document analysis1 (2)

aSome studies included multiple methods and thus were counted twice.

bPAEHR: patient-accessible electronic health record.

cWe did not report the specific methods of intervention studies; instead, we just categorized them as interventions.

Participants

Most studies (37/66, 56%) included only patients as participants, while 27% (18/66) of the studies included only HCPs, and 15% (10/66) of the studies included both patients and HCPs. Table 3 provides a more detailed breakdown of participants. Nurses were the most represented HCPs, followed by social workers, psychologists, psychiatrists, and physicians. Family members, carers, and peer workers were rarely involved as participants in the included studies.

Table 3. Participants in the included studies (N=66).
ParticipantsStudies, n (%)
Study sample (high level)

HCPsa18 (27)

Patients37 (56)

Both HCPs and patients10 (15)

Other or not specified1 (2)
Study sample (detailed)

Patients48 (73)

Family and carers3 (5)

Peer workers3 (5)

Social workers17 (26)

Psychiatrists14 (21)

Psychologists16 (24)

Mental health nurses, nurse practitioners, nurses, and nurse assistants19 (29)

Physicians, doctors, general practitioners, and family physicians14 (21)

Allied health—not including psychologists (occupational therapists, counselors, and physiotherapists)5 (8)

Administrative staff7 (11)

aHCP: health care professional.

Research Focus

We compared the aims of the included studies and grouped them according to similar topic areas, as outlined in Table 4. Most studies focused on the general experiences and perceptions of HCPs (18/66, 27%) and patients (13/66, 20%) toward a PAEHR. Several studies also explored specific clinical interventions or models of care using a PAEHR (12/66, 18%) and adoption and use rates across different demographic groups (11/66, 17%).

Table 4. Research focus (N=66).
Research focusStudies, n (%)a
HCPs’b experience and perspectives of PAEHRc18 (27)
Patients’ experience and perspectives of PAEHR13 (20)
Interventions using a PAEHR12 (18)
Adoption and use of PAEHR by different patient groups11 (17)
Design and usability of PAEHR for patients7 (11)
Barriers and facilitators to patients using PAEHR4 (6)
HCP or patient perspectives of the impact of PAEHR on therapeutic relationships5 (8)
Exploring how education or training can support the use of PAEHR by an HCP or patient3 (5)
Describing policies related to PAEHR2 (3)
Exploring the impact of PAEHRs on transparency in the clinical encounter2 (3)
Perceived benefits, harms, or risks of PAEHRs2 (3)
Other (exploring errors in PAEHR, changing HCP practices, family or carer perceptions, reasons patients do not adopt PAEHR, perspectives on the needs of patients and clinicians when using OpenNotes, and impact of PAEHR on medication adherence)6 (9)

aSome studies included multiple research aims and thus were counted twice.

bHCP: health care professional.

cPAEHR: patient-accessible electronic health record.

PAEHR System Used

There were several challenges in defining the PAEHR system used in each study. Most studies (26/66, 40%) discussed patient portals or OpenNotes generally without specifying a specific product or whether the system was a patient portal of ePHR (Table 5). Some studies discussed systems that appeared to be implemented at the national or health system level, although it was difficult to discern across studies if the same system was being discussed.

Table 5. Patient-accessible electronic health record (PAEHR) systems reported in the included studies (N=66).
Type of PAEHRPatient portal or ePHRa (categorized by author)Studies, n (%)
Lawson Smart RecordePHR4 (6)
Veterans Affairs My HealtheVetPatient portal13 (20)
Patient Portal—general (including OpenNotes)Patient portal26 (40)
Swedish JournalenPatient portal8 (12)
Helsenorge.no [Fagerlund AJ, Kristiansen E, Simonsen RA. Experiences from using patient accessible electronic health records - a qualitative study within Sámi mental health patients in Norway. Int J Circumpolar Health. Dec 17, 2022;81(1):2025682. [FREE Full text] [CrossRef] [Medline]46-Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49]Patient portal4 (6)
ePHR—generalePHR6 (9)
My Health LockerePHR2 (3)
EPIC MyChartPortalPatient portal1 (2)
My Medical RecordPatient portal1 (2)
MyCare (Cerner patient portal)Patient portal1 (2)

aePHR: electronic personal health record.

Implementation Status

Most studies (51/66, 77%) reported on a PAEHR that had been implemented (Table 6).

Table 6. Implementation status of patient-accessible electronic health record (PAEHR; N=66).
Implementation status of PAEHRStudies, n (%)
Implemented PAEHR51 (77)
Soon-to-be-implemented PAEHR5 (8)
PAEHR being designed as part of the study3 (5)
Not applicable (expert perspective)2 (3)
Partial implementation, including if some participants were using or had access to the PAEHR3 (5)
Pre-post implementation1 (2)
Unclear1 (2)
Functionality of PAEHR

The included studies did not provide enough information for a thorough analysis of the functions available across the different PAEHRs. Therefore, we only address specific elements of functionality related to the themes discussed in the results of the thematic synthesis discussed in the Thematic Results section.

Study Quality

Due to the heterogeneity of the included studies and the lack of evaluation instruments that could be applied systematically across these studies, a quality evaluation was not deemed appropriate for this scoping review. It is optional for scoping reviews to evaluate the quality of the included studies [Fisher B, Bhavnani V, Winfield M. How patients use access to their full health records: a qualitative study of patients in general practice. J R Soc Med. Dec 2009;102(12):539-544. [FREE Full text] [CrossRef] [Medline]50]. One quality issue we identified during the review of the included studies was a lack of detail regarding the functionality and technical specifications of the PAEHRs, which Talmon et al [Talmon J, Ammenwerth E, Brender J, de Keizer N, Nykänen P, Rigby M. STARE-HI--statement on reporting of evaluation studies in health informatics. Int J Med Inform. Jan 2009;78(1):1-9. [CrossRef] [Medline]51] recommend should be reported in health informatics studies. We identified a lack of reporting on functionality and technical specifications in our previous scoping review of EHRs [Kariotis TC, Prictor M, Chang S, Gray K. Impact of electronic health records on information practices in mental health contexts: scoping review. J Med Internet Res. May 04, 2022;24(5):e30405. [FREE Full text] [CrossRef] [Medline]15].

During the peer-review process, a reviewer identified that 4 articles were published in journals that they considered predatory. We concluded that publishing in a predatory journal is not necessarily an indication of the quality of the study, and thus, we decided to include these studies in the review.

Thematic Results

Overview

In the following sections, we report on the findings of the thematic synthesis of the 66 included studies. The analysis led to the development of 8 themes and 12 subthemes. The themes are outlined in Table 7. Illustrative quotes for each theme are provided in

Multimedia Appendix 3

Illustrative quotes.

DOCX File , 24 KBMultimedia Appendix 3.

Table 7. Summary of themes.
ThemesSubthemes
Theme 1: patient-accessible electronic health records (PAEHRs) change the purpose of the health recorda
Theme 2: health care professionals (HCPs) change their information practices to protect the therapeutic relationship and patient safety
  • Subtheme 2.1: PAEHRs introduce risks to the therapeutic relationship
  • Subtheme 2.2: PAEHRs introduce risks to patient safety
  • Subtheme 2.3: trust, transparency, and accuracy of information can mitigate the risks posed by the PAEHRs to the therapeutic relationship and patient safety
  • Subtheme 2.4: PAEHRs offer opportunities to enhance accountability and communication between HCPs and patients regarding the documentation of information
Theme 3: PAEHRs disrupt HCPs’ documentation practices
  • Subtheme 3.1: HCPs document less detailed information in PAEHRs, particularly relating to sensitive information
  • Subtheme 3.2: PAEHRs require HCPs to document information that patients will understand
  • Subtheme 3.3: PAEHRs require HCPs to take a person-centered approach when documenting potentially subjective information
  • Subtheme 3.4: HCPs limit the documentation of uncertain information in PAEHRs
  • Subtheme 3.5: HCPs may omit content or restrict access to PAEHRs
Theme 4: PAEHRs introduce changes to HCPs’ information workflows
Theme 5: HCPs require tailored training, education, and guidelines on documenting information in a PAEHR
Theme 6: patients are empowered with new information practices if they are supported to use their PAEHR
  • Subtheme 6.1: patients need support to use their PAEHR
  • Subtheme 6.2: PAEHRs must be easy for patients to navigate, access, and understand

Theme 7: PAEHRs raise new concerns about information privacy and security for HCPs, patients, and third parties
  • Subtheme 7.1: PAEHRs pose challenges to managing third-party data
  • Subtheme 7.2: PAEHRs pose challenges to managing third-party access to patient information

aNo subthemes.

Theme 1: PAEHRs Change the Purpose of the Health Record

HCPs perceived that the introduction of a PAEHR changed the purpose of the health record, with HCPs concerned by the increasing array of audiences they had to consider when documenting information [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Chimowitz H, O'Neill S, Leveille S, Welch K, Walker J. Sharing psychotherapy notes with patients: therapists' attitudes and experiences. Soc Work. Apr 01, 2020;65(2):159-168. [CrossRef] [Medline]52-Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54]. This change was framed as a culture shift [Mayhew C, Strudwick G, Waddell J. Clinical nurse specialists’ perceptions of a mental health patient portal. Clin Nurse Spec. 2018;32(6):313-322. [CrossRef]55], with one HCP in the study by Denneson et al [Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53] describing it as “antithetical to the way that many of us have been, literally, trained and learned to think about our field.” HCPs thought the way information was documented previously, which assumed that only other HCPs would access it, was inappropriate for patients and would pose risks such as worry, offense, or distress for patients [Johansen MA, Kummervold PE, Sørensen T, Zanaboni P. Health professionals' experience with patients accessing their electronic health records: results from an online survey. Stud Health Technol Inform. Aug 21, 2019;264:504-508. [CrossRef] [Medline]47,Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Chimowitz H, O'Neill S, Leveille S, Welch K, Walker J. Sharing psychotherapy notes with patients: therapists' attitudes and experiences. Soc Work. Apr 01, 2020;65(2):159-168. [CrossRef] [Medline]52,Petersson J, Backman C. Off the record: the invisibility work of doctors in a patient-accessible electronic health record information service. Sociol Health Illn. Jun 2021;43(5):1270-1285. [CrossRef] [Medline]56]. Conversely, there was a perception that writing only for the patients may reduce the clinical value of the EHR [Erlingsdóttir G, Petersson L, Jonnergård K. A theoretical twist on the transparency of open notes: qualitative analysis of health care professionals' free-text answers. J Med Internet Res. Sep 25, 2019;21(9):e14347. [FREE Full text] [CrossRef] [Medline]57]. HCPs in several studies also perceived a shift in control over the health records due to the ability of patients to access their health records in real time via their PAEHR [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Petersson J, Backman C. Off the record: the invisibility work of doctors in a patient-accessible electronic health record information service. Sociol Health Illn. Jun 2021;43(5):1270-1285. [CrossRef] [Medline]56,Erlingsdóttir G, Petersson L, Jonnergård K. A theoretical twist on the transparency of open notes: qualitative analysis of health care professionals' free-text answers. J Med Internet Res. Sep 25, 2019;21(9):e14347. [FREE Full text] [CrossRef] [Medline]57]. Although patients may have previously been able to request access to their records, clinicians described having had more control over what was released and when it was released [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53]. HCPs also felt they had less control over what patients might do with the information in their PAEHR, such as sharing it with third parties [van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58].

Theme 2: HCPs Change Their Information Practices to Protect the Therapeutic Relationship and Patient Safety
Overview

HCPs were concerned that PAEHRs would damage the therapeutic relationship because patients may not understand what is documented in their PAEHR or experience distress from reading their PAEHR. Some HCPs and patients recognized that PAEHRs could enhance the therapeutic relationship through improved transparency and communication about what was documented. However, the perceived risks appeared to be significant enough to change HCPs’ information practices. These perceived risks are part of a broader perception, outlined in theme 1, that the purpose of the record changes when patients have access to it via a PAEHR and that this puts into question previous practices around what is documented, for whom, and for what purpose.

Subtheme 2.1: PAEHRs Introduce Risks to the Therapeutic Relationship

HCPs across several studies reported concerns that PAEHRs would negatively impact the therapeutic relationship due to patients not understanding what was written in their record or perceiving something written in their record to be a negative judgment about them [Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53,van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58-Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61]. This risk shaped many of the documentation changes described in theme 3. HCPs described a risk that patients might see a disconnect between what was written in their record and their in-person clinical experience [Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53]. For example, what HCPs document is not always the same information they would share with patients, such as clinical formulations [Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53]. HCPs in the study by van Rijt et al [van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58] perceived a risk that patients might feel “insulted, misinterpret the information given, or feel unheard,” which in turn may negatively impact a patient’s trust in the HCP. In comparison, patients in the included studies focused more on the benefits of the PAEHR for the therapeutic relationship, as considered in subthemes 2.3 and 2.4.

Subtheme 2.2: PAEHRs Introduce Risks to Patient Safety

HCPs across several studies reported a concern for patient safety, specifically that patients might find the PAEHR overwhelming and distressing or be triggered by reading their records [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53,Mayhew C, Strudwick G, Waddell J. Clinical nurse specialists’ perceptions of a mental health patient portal. Clin Nurse Spec. 2018;32(6):313-322. [CrossRef]55,Erlingsdóttir G, Petersson L, Jonnergård K. A theoretical twist on the transparency of open notes: qualitative analysis of health care professionals' free-text answers. J Med Internet Res. Sep 25, 2019;21(9):e14347. [FREE Full text] [CrossRef] [Medline]57-Dobscha SK, Denneson LM, Jacobson LE, Williams HB, Cromer R, Woods S. VA mental health clinician experiences and attitudes toward OpenNotes. Gen Hosp Psychiatry. 2016;38:89-93. [CrossRef] [Medline]59,Turvey CL, Fuhrmeister LA, Klein DM, Moeckli J, Howren MB, Chasco EE. Patient and provider experience of electronic patient portals and secure messaging in mental health treatment. Telemed J E Health. Feb 2022;28(2):189-198. [FREE Full text] [CrossRef] [Medline]62]. For example, Turvey et al [Turvey CL, Fuhrmeister LA, Klein DM, Moeckli J, Howren MB, Chasco EE. Patient and provider experience of electronic patient portals and secure messaging in mental health treatment. Telemed J E Health. Feb 2022;28(2):189-198. [FREE Full text] [CrossRef] [Medline]62] reported that 55% (16/29) of HCPs in their study reported having patients who experienced significant distress after reading their records, while 29% (8/29) and 21% (6/29) of HCPs reported experiences of patients terminating treatment after accessing their records or reporting having engaged in “negative and/or self-destructive behavior toward themselves or others,” respectively. These results do not specify how many patients had negative experiences of reading their PAEHR. Rather these results suggest that HCPs are coming across examples of patients’ having negative experiences, which is shaping their perception of PAEHRs. These concerns could be considered through the lens of HCPs’ ethical need to keep patients safe, with HCPs in the study by Jonnergård et al [Jonnergård K, Petersson L, Erlingsdóttir G. Communicating the implementation of open notes to health care professionals: mixed methods study. JMIR Med Inform. Aug 16, 2021;9(8):e22391. [FREE Full text] [CrossRef] [Medline]63] identifying “patient safety” as the most important issue to be addressed in implementing OpenNotes. In addition, there were some concerns that PAEHRs might lead to increased violent behavior by patients. However, studies that explored these concerns did not find evidence of increased violent behavior from the adoption of PAEHRs in mental health contexts [Åkerstedt US, Cajander Å, Moll J, Ålander T. On threats and violence for staff and patient accessible electronic health records. Cogent Psychol. Sep 27, 2018;5(1):1518967. [CrossRef]64,Petersson L, Erlingsdóttir G. Open notes in Swedish psychiatric care (part 2): survey among psychiatric care professionals. JMIR Ment Health. Jun 21, 2018;5(2):e10521. [FREE Full text] [CrossRef] [Medline]65].

Patients were concerned about the risk of being upset by access to their PAEHR or experiencing anxiety when thinking about what might be written in their PAEHR [Erlingsdóttir G, Petersson L, Jonnergård K. A theoretical twist on the transparency of open notes: qualitative analysis of health care professionals' free-text answers. J Med Internet Res. Sep 25, 2019;21(9):e14347. [FREE Full text] [CrossRef] [Medline]57,Shin HD, Durocher K, Lo B, Chen S, Ma C, Wiljer D, et al. Impact of a mental health patient portal on patients’ views of compassion: a mixed-methods study. BMC Digit Health. Jan 24, 2023;1(1). [FREE Full text] [CrossRef]66]. For example, 11% (4/37) of patients reported “sometimes experiencing significant distress” after reading their record in the study by Turvey et al [Turvey CL, Fuhrmeister LA, Klein DM, Moeckli J, Howren MB, Chasco EE. Patient and provider experience of electronic patient portals and secure messaging in mental health treatment. Telemed J E Health. Feb 2022;28(2):189-198. [FREE Full text] [CrossRef] [Medline]62]. Denneson et al [Denneson LM, Chen JI, Pisciotta M, Tuepker A, Dobscha SK. Patients' positive and negative responses to reading mental health clinical notes online. Psychiatr Serv. May 01, 2018;69(5):593-596. [FREE Full text] [CrossRef] [Medline]67] found in patient survey that 26.4% (47/178) of patients sometimes, and 8.4% (15/178) often or always, “experienced stress or worry after reading their record,” while 18% (32/178) of patients sometimes, and 8.4% (15/178) often or always, reported “feeling upset.” A common reason reported for patients feeling upset after accessing their PAEHR was because they made the patients’ problems seem smaller than they were [Denneson LM, Chen JI, Pisciotta M, Tuepker A, Dobscha SK. Patients' positive and negative responses to reading mental health clinical notes online. Psychiatr Serv. May 01, 2018;69(5):593-596. [FREE Full text] [CrossRef] [Medline]67]. Some patients in the study by Schwarz et al [Schwarz J, Meier-Diedrich E, Neumann K, Heinze M, Eisenmann Y, Thoma S. Reasons for acceptance or rejection of online record access among patients affected by a severe mental illness: mixed methods study. JMIR Ment Health. Feb 05, 2024;11:e51126. [FREE Full text] [CrossRef] [Medline]68] also reported a fear of reading their records because of how confronting it may be to revisit the experiences they had shared with their HCPs during clinical sessions. Alternatively, accessing information in the PAEHR between appointments could reduce the anxiety of waiting to see the HCP [Durocher K, Shin HD, Lo B, Chen S, Ma C, Strudwick G. Understanding the role of patient portals in fostering interprofessional collaboration within mental health care settings: mixed methods study. JMIR Hum Factors. Jul 19, 2023;10:e44747. [FREE Full text] [CrossRef] [Medline]37]. Interestingly, the 1 study that compared patients with mental health diagnoses to patients without mental health diagnoses found no difference in perceptions, including the likelihood to report worry, toward viewing their records [Klein JW, Peacock S, Tsui JI, O'Neill SF, DesRoches CM, Elmore JG. Perceptions of primary care notes by patients with mental health diagnoses. Ann Fam Med. Jul 2018;16(4):343-345. [FREE Full text] [CrossRef] [Medline]69].

Subtheme 2.3: Trust, Transparency, and Accuracy of Information Can Mitigate the Risks Posed by the PAEHRs to the Therapeutic Relationship and Patient Safety

Trust and transparency mediated the potential negative impact of PAEHRs on the therapeutic relationship. Several studies found that PAEHRs could support the therapeutic relationship through improved transparency and trust [Durocher K, Shin HD, Lo B, Chen S, Ma C, Strudwick G. Understanding the role of patient portals in fostering interprofessional collaboration within mental health care settings: mixed methods study. JMIR Hum Factors. Jul 19, 2023;10:e44747. [FREE Full text] [CrossRef] [Medline]37,Cromer R, Denneson LM, Pisciotta M, Williams H, Woods S, Dobscha SK. Trust in mental health clinicians among patients who access clinical notes online. Psychiatr Serv. May 01, 2017;68(5):520-523. [FREE Full text] [CrossRef] [Medline]38,Chimowitz H, O'Neill S, Leveille S, Welch K, Walker J. Sharing psychotherapy notes with patients: therapists' attitudes and experiences. Soc Work. Apr 01, 2020;65(2):159-168. [CrossRef] [Medline]52,Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54,Erlingsdóttir G, Petersson L, Jonnergård K. A theoretical twist on the transparency of open notes: qualitative analysis of health care professionals' free-text answers. J Med Internet Res. Sep 25, 2019;21(9):e14347. [FREE Full text] [CrossRef] [Medline]57,Schwarz J, Meier-Diedrich E, Neumann K, Heinze M, Eisenmann Y, Thoma S. Reasons for acceptance or rejection of online record access among patients affected by a severe mental illness: mixed methods study. JMIR Ment Health. Feb 05, 2024;11:e51126. [FREE Full text] [CrossRef] [Medline]68], particularly when information in the PAEHR aligned with what was discussed in the clinical encounter [Cromer R, Denneson LM, Pisciotta M, Williams H, Woods S, Dobscha SK. Trust in mental health clinicians among patients who access clinical notes online. Psychiatr Serv. May 01, 2017;68(5):520-523. [FREE Full text] [CrossRef] [Medline]38,Shin HD, Durocher K, Lo B, Chen S, Ma C, Wiljer D, et al. Impact of a mental health patient portal on patients’ views of compassion: a mixed-methods study. BMC Digit Health. Jan 24, 2023;1(1). [FREE Full text] [CrossRef]66,Denneson LM, Chen JI, Pisciotta M, Tuepker A, Dobscha SK. Patients' positive and negative responses to reading mental health clinical notes online. Psychiatr Serv. May 01, 2018;69(5):593-596. [FREE Full text] [CrossRef] [Medline]67]. For example, the study by Cromer et al [Cromer R, Denneson LM, Pisciotta M, Williams H, Woods S, Dobscha SK. Trust in mental health clinicians among patients who access clinical notes online. Psychiatr Serv. May 01, 2017;68(5):520-523. [FREE Full text] [CrossRef] [Medline]38] reported a negative impact on patients’ trust in HCPs when they perceived low transparency about what was documented and when there was outdated information, mistakes, details that did not align with their recollection, or missing information. Similarly, patients in the study by Pisciotta et al [Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61] reported that the quality of information documented in their PAEHR was important to patients, including accurate notes that were not copied and pasted from previous sessions. Schwarz et al [Schwarz J, Meier-Diedrich E, Neumann K, Heinze M, Eisenmann Y, Thoma S. Reasons for acceptance or rejection of online record access among patients affected by a severe mental illness: mixed methods study. JMIR Ment Health. Feb 05, 2024;11:e51126. [FREE Full text] [CrossRef] [Medline]68] described this as a “trust, but verify” situation, where patients valued the opportunity to confirm that HCPs understood them and their needs. Accuracy was also important, as patients were worried that inaccurate records could negatively affect their future treatment [Cromer R, Denneson LM, Pisciotta M, Williams H, Woods S, Dobscha SK. Trust in mental health clinicians among patients who access clinical notes online. Psychiatr Serv. May 01, 2017;68(5):520-523. [FREE Full text] [CrossRef] [Medline]38].

Subtheme 2.4: PAEHRs Offer Opportunities to Enhance Accountability and Communication Between HCPs and Patients About What Is Documented

Communication between HCPs and patients about the PAEHR and what was being documented was identified as important for building trust and strengthening the therapeutic relationship [Cromer R, Denneson LM, Pisciotta M, Williams H, Woods S, Dobscha SK. Trust in mental health clinicians among patients who access clinical notes online. Psychiatr Serv. May 01, 2017;68(5):520-523. [FREE Full text] [CrossRef] [Medline]38,Fisher B, Bhavnani V, Winfield M. How patients use access to their full health records: a qualitative study of patients in general practice. J R Soc Med. Dec 2009;102(12):539-544. [FREE Full text] [CrossRef] [Medline]50,Chimowitz H, O'Neill S, Leveille S, Welch K, Walker J. Sharing psychotherapy notes with patients: therapists' attitudes and experiences. Soc Work. Apr 01, 2020;65(2):159-168. [CrossRef] [Medline]52,Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53,Erlingsdóttir G, Petersson L, Jonnergård K. A theoretical twist on the transparency of open notes: qualitative analysis of health care professionals' free-text answers. J Med Internet Res. Sep 25, 2019;21(9):e14347. [FREE Full text] [CrossRef] [Medline]57,Shin HD, Durocher K, Lo B, Chen S, Ma C, Wiljer D, et al. Impact of a mental health patient portal on patients’ views of compassion: a mixed-methods study. BMC Digit Health. Jan 24, 2023;1(1). [FREE Full text] [CrossRef]66,Denneson LM, Chen JI, Pisciotta M, Tuepker A, Dobscha SK. Patients' positive and negative responses to reading mental health clinical notes online. Psychiatr Serv. May 01, 2018;69(5):593-596. [FREE Full text] [CrossRef] [Medline]67,Blease C, Kharko A, Hägglund M, O'Neill S, Wachenheim D, Salmi L, et al. The benefits and harms of open notes in mental health: a Delphi survey of international experts. PLoS One. Oct 13, 2021;16(10):e0258056. [FREE Full text] [CrossRef] [Medline]70]. HCPs in the study by Denneson et al [Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53] discussed the role of communication, disagreements, and listening as important to consider when documenting in the PAEHR. In the study by Cromer et al [Cromer R, Denneson LM, Pisciotta M, Williams H, Woods S, Dobscha SK. Trust in mental health clinicians among patients who access clinical notes online. Psychiatr Serv. May 01, 2017;68(5):520-523. [FREE Full text] [CrossRef] [Medline]38], patients spoke of trust being built when HCPs listened to them, approached the relationship as an equal, and focused on the patient’s strengths. Several studies suggested that communication about what was documented, even disagreements, could positively contribute to the therapeutic relationship [Cromer R, Denneson LM, Pisciotta M, Williams H, Woods S, Dobscha SK. Trust in mental health clinicians among patients who access clinical notes online. Psychiatr Serv. May 01, 2017;68(5):520-523. [FREE Full text] [CrossRef] [Medline]38,Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53,van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58,Turvey CL, Fuhrmeister LA, Klein DM, Moeckli J, Howren MB, Chasco EE. Patient and provider experience of electronic patient portals and secure messaging in mental health treatment. Telemed J E Health. Feb 2022;28(2):189-198. [FREE Full text] [CrossRef] [Medline]62]. Interestingly, Pisciotta et al [Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61] found that patients and HCPs avoided discussing health records for different reasons. HCPs were worried about patients challenging their records or requesting changes, and patients were worried about appearing difficult or offending the HCP. However, both HCPs and patients agreed that having a conversation about information before it is documented in the PAEHR is beneficial [Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61].

Although both HCPs and patients fear disagreements over what is documented in the PAEHR, disagreements could also provide an opportunity to improve accountability and communication [Durocher K, Shin HD, Lo B, Chen S, Ma C, Strudwick G. Understanding the role of patient portals in fostering interprofessional collaboration within mental health care settings: mixed methods study. JMIR Hum Factors. Jul 19, 2023;10:e44747. [FREE Full text] [CrossRef] [Medline]37,Fagerlund AJ, Kristiansen E, Simonsen RA. Experiences from using patient accessible electronic health records - a qualitative study within Sámi mental health patients in Norway. Int J Circumpolar Health. Dec 17, 2022;81(1):2025682. [FREE Full text] [CrossRef] [Medline]46,Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58,Schwarz J, Meier-Diedrich E, Neumann K, Heinze M, Eisenmann Y, Thoma S. Reasons for acceptance or rejection of online record access among patients affected by a severe mental illness: mixed methods study. JMIR Ment Health. Feb 05, 2024;11:e51126. [FREE Full text] [CrossRef] [Medline]68,Blease C, Torous J, Kharko A, DesRoches CM, Harcourt K, O'Neill S, et al. Preparing patients and clinicians for open notes in mental health: qualitative inquiry of international experts. JMIR Ment Health. Apr 16, 2021;8(4):e27397. [FREE Full text] [CrossRef] [Medline]71]. Disagreements may come about due to legitimate errors in what was documented, a misunderstanding of what was discussed and documented, or an actual disagreement between the HCP and patient as to what they understood was true [Fagerlund AJ, Kristiansen E, Simonsen RA. Experiences from using patient accessible electronic health records - a qualitative study within Sámi mental health patients in Norway. Int J Circumpolar Health. Dec 17, 2022;81(1):2025682. [FREE Full text] [CrossRef] [Medline]46,Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Chimowitz H, O'Neill S, Leveille S, Welch K, Walker J. Sharing psychotherapy notes with patients: therapists' attitudes and experiences. Soc Work. Apr 01, 2020;65(2):159-168. [CrossRef] [Medline]52,Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53,Turvey CL, Fuhrmeister LA, Klein DM, Moeckli J, Howren MB, Chasco EE. Patient and provider experience of electronic patient portals and secure messaging in mental health treatment. Telemed J E Health. Feb 2022;28(2):189-198. [FREE Full text] [CrossRef] [Medline]62]. However, these disagreements could improve the PAEHR by addressing errors or misunderstandings and providing opportunities to discuss issues that were previously left unspoken [Fagerlund AJ, Kristiansen E, Simonsen RA. Experiences from using patient accessible electronic health records - a qualitative study within Sámi mental health patients in Norway. Int J Circumpolar Health. Dec 17, 2022;81(1):2025682. [FREE Full text] [CrossRef] [Medline]46,Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54,van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58,Blease C, Torous J, Kharko A, DesRoches CM, Harcourt K, O'Neill S, et al. Preparing patients and clinicians for open notes in mental health: qualitative inquiry of international experts. JMIR Ment Health. Apr 16, 2021;8(4):e27397. [FREE Full text] [CrossRef] [Medline]71]. Patients commonly identified errors in their PAEHR; in a national Swedish survey by Bärkås et al [Bärkås A, Kharko A, Blease C, Cajander Å, Johansen Fagerlund A, Huvila I, et al. Errors, omissions, and offenses in the health record of mental health care patients: results from a nationwide survey in Sweden. J Med Internet Res. Nov 03, 2023;25:e47841. [CrossRef] [Medline]72], half of the respondents (1586/3131, 50.56%) from mental health care contexts reported finding an error, while a third (1089/3131, 34.78%) reported finding an omission. In addition, Bärkås et al [Bärkås A, Kharko A, Blease C, Cajander Å, Johansen Fagerlund A, Huvila I, et al. Errors, omissions, and offenses in the health record of mental health care patients: results from a nationwide survey in Sweden. J Med Internet Res. Nov 03, 2023;25:e47841. [CrossRef] [Medline]72] found that patients in mental health care settings were more likely to identify errors and rate them as serious than patients in other health care settings. Some HCPs saw the PAEHR as a way to increase accountability by having a feedback loop where patients could review their health record and report inaccuracies, errors, or misinterpretations [Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53,Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54]. Knowing that patients may disagree with what is written in the PAEHR may motivate clinicians to proactively discuss what they are documenting with patients and consider patients’ needs when documenting information [Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53,Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61,Turvey CL, Fuhrmeister LA, Klein DM, Moeckli J, Howren MB, Chasco EE. Patient and provider experience of electronic patient portals and secure messaging in mental health treatment. Telemed J E Health. Feb 2022;28(2):189-198. [FREE Full text] [CrossRef] [Medline]62].

Although HCPs were concerned that some patients may try to dictate what should be written in their PAEHR and the care they receive [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54], there was limited evidence of this occurring. For example, only 15.4% (~51/332) of HCPs in the study by Johansen et al [Johansen MA, Kummervold PE, Sørensen T, Zanaboni P. Health professionals' experience with patients accessing their electronic health records: results from an online survey. Stud Health Technol Inform. Aug 21, 2019;264:504-508. [CrossRef] [Medline]47] reported receiving patient feedback. However, this may be due to patients’ low awareness of the PAEHR, as outlined in theme 6.

Theme 3: PAEHRs Disrupt HCPs’ Documentation Practices
Overview

HCPs reported that giving patients access to their mental health records would lead to or had led to changes in how they documented information [Johansen MA, Kummervold PE, Sørensen T, Zanaboni P. Health professionals' experience with patients accessing their electronic health records: results from an online survey. Stud Health Technol Inform. Aug 21, 2019;264:504-508. [CrossRef] [Medline]47,Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53,Erlingsdóttir G, Petersson L, Jonnergård K. A theoretical twist on the transparency of open notes: qualitative analysis of health care professionals' free-text answers. J Med Internet Res. Sep 25, 2019;21(9):e14347. [FREE Full text] [CrossRef] [Medline]57,van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58,Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61,Petersson L, Erlingsdóttir G. Open notes in Swedish psychiatric care (part 2): survey among psychiatric care professionals. JMIR Ment Health. Jun 21, 2018;5(2):e10521. [FREE Full text] [CrossRef] [Medline]65,Dobscha SK, Kenyon EA, Pisciotta MK, Niederhausen M, Woods S, Denneson LM. Impacts of a web-based course on mental health clinicians' attitudes and communication behaviors related to use of OpenNotes. Psychiatr Serv. Jun 01, 2019;70(6):474-479. [CrossRef] [Medline]73,Petersson L, Erlingsdóttir G. Open notes in Swedish psychiatric care (part 1): survey among psychiatric care professionals. JMIR Ment Health. Feb 02, 2018;5(1):e11. [FREE Full text] [CrossRef] [Medline]74]. These changes were usually framed as an attempt to protect the therapeutic relationship from potential misunderstandings or to protect patients from distress caused by reading their health record. As outlined in theme 2, HCPs appear to take a risk-averse approach to PAEHRs due to a perception that patients may react negatively or experience distress from reading their PAEHR. However, HCPs also seem to recognize that certain ways of framing information about patients may trigger a negative reaction, disagreement, or distress. There was a lack of guidance, support, or training for HCPs on managing these risks when documenting information in a PAEHR [Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53,Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54,Petersson J, Backman C. Off the record: the invisibility work of doctors in a patient-accessible electronic health record information service. Sociol Health Illn. Jun 2021;43(5):1270-1285. [CrossRef] [Medline]56,Gasteiger N, Fleming T, Day K. Converging perspectives of providers and student users on extending a patient portal into a university-based mental health service: a qualitative study. Internet Interv. Mar 2020;19:100304. [FREE Full text] [CrossRef] [Medline]75].

Subtheme 3.1: HCPs Document Less Detailed Information in PAEHRs, Particularly Relating to Sensitive Information

Clinicians addressed perceived risks posed by the PAEHR by omitting or “watering down” information that the patient might perceive negatively [Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53,Erlingsdóttir G, Petersson L, Jonnergård K. A theoretical twist on the transparency of open notes: qualitative analysis of health care professionals' free-text answers. J Med Internet Res. Sep 25, 2019;21(9):e14347. [FREE Full text] [CrossRef] [Medline]57-Dobscha SK, Denneson LM, Jacobson LE, Williams HB, Cromer R, Woods S. VA mental health clinician experiences and attitudes toward OpenNotes. Gen Hosp Psychiatry. 2016;38:89-93. [CrossRef] [Medline]59,Petersson L, Erlingsdóttir G. Open notes in Swedish psychiatric care (part 2): survey among psychiatric care professionals. JMIR Ment Health. Jun 21, 2018;5(2):e10521. [FREE Full text] [CrossRef] [Medline]65,Blease C, Kharko A, Hägglund M, O'Neill S, Wachenheim D, Salmi L, et al. The benefits and harms of open notes in mental health: a Delphi survey of international experts. PLoS One. Oct 13, 2021;16(10):e0258056. [FREE Full text] [CrossRef] [Medline]70,Peck P, Torous J, Shanahan M, Fossa A, Greenberg W. Patient access to electronic psychiatric records: a pilot study. Health Policy Technol. Sep 2017;6(3):309-315. [CrossRef]76]. Petersson et al [Petersson L, Erlingsdóttir G. Open notes in Swedish psychiatric care (part 2): survey among psychiatric care professionals. JMIR Ment Health. Jun 21, 2018;5(2):e10521. [FREE Full text] [CrossRef] [Medline]65], in exploring the adoption of OpenNotes in Swedish Psychiatric Care settings, found that 22% (147/667) and 17.7% (117/662) of HCPs surveyed were less candid in their documentation and took more time to edit notes, respectively. Similarly, 63% (127/~208) of HCPs in the study by Dobscha et al [Dobscha SK, Denneson LM, Jacobson LE, Williams HB, Cromer R, Woods S. VA mental health clinician experiences and attitudes toward OpenNotes. Gen Hosp Psychiatry. 2016;38:89-93. [CrossRef] [Medline]59] reported that they are or plan to be less detailed in their documentation. One reason reported for including less detail was a perception that more detailed notes increased the potential for misinterpretation and disagreements [Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61]. An HCP in the study by Zanaboni et al [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49] described it as not writing “things that you can keep to yourself,” such as longer hypotheses. However, some HCPs considered that the benefit of documenting complete information outweighed the risks and that any harm could be repaired through discussions with the patient [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49]. Patients preferred detailed notes that provided a complete picture of their appointment and mental health, as they perceived the health record to be a reflection of the HCPs’ understanding of them [Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61].

HCPs and patients agreed that sensitive information required careful management in how it was documented in PAEHRs [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54,van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58,Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61,Petersson L, Erlingsdóttir G. Open notes in Swedish psychiatric care (part 2): survey among psychiatric care professionals. JMIR Ment Health. Jun 21, 2018;5(2):e10521. [FREE Full text] [CrossRef] [Medline]65,Blease C, Torous J, Kharko A, DesRoches CM, Harcourt K, O'Neill S, et al. Preparing patients and clinicians for open notes in mental health: qualitative inquiry of international experts. JMIR Ment Health. Apr 16, 2021;8(4):e27397. [FREE Full text] [CrossRef] [Medline]71,Petersson L, Erlingsdóttir G. Open notes in Swedish psychiatric care (part 1): survey among psychiatric care professionals. JMIR Ment Health. Feb 02, 2018;5(1):e11. [FREE Full text] [CrossRef] [Medline]74-Bärkås A, Scandurra I, Rexhepi H, Blease C, Cajander Å, Hägglund M. Patients' access to their psychiatric notes: current policies and practices in Sweden. Int J Environ Res Public Health. Aug 30, 2021;18(17):9140. [FREE Full text] [CrossRef] [Medline]78]. Sensitive information was defined broadly, including information that patients may not want to be shared beyond the clinical encounter, information that may be triggering or distressing for the patient, information that might be stigmatizing, and information related to the risk of self-harm or suicide [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54,van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58,Blease C, Torous J, Kharko A, DesRoches CM, Harcourt K, O'Neill S, et al. Preparing patients and clinicians for open notes in mental health: qualitative inquiry of international experts. JMIR Ment Health. Apr 16, 2021;8(4):e27397. [FREE Full text] [CrossRef] [Medline]71,Gasteiger N, Fleming T, Day K. Converging perspectives of providers and student users on extending a patient portal into a university-based mental health service: a qualitative study. Internet Interv. Mar 2020;19:100304. [FREE Full text] [CrossRef] [Medline]75,Bärkås A, Scandurra I, Rexhepi H, Blease C, Cajander Å, Hägglund M. Patients' access to their psychiatric notes: current policies and practices in Sweden. Int J Environ Res Public Health. Aug 30, 2021;18(17):9140. [FREE Full text] [CrossRef] [Medline]78,Matthews EB, Savoy M, Paranjape A, Washington D, Hackney T, Galis D, et al. Acceptability of health information exchange and patient portal use in depression care among underrepresented patients. J Gen Intern Med. Nov 2022;37(15):3947-3955. [FREE Full text] [CrossRef] [Medline]79]. It was common for studies to refer to mental health information generally as sensitive information. Some clinicians reported excluding specific details from the PAEHR that could be triggering, traumatic, or cause harm to patients [van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58,Blease C, Torous J, Kharko A, DesRoches CM, Harcourt K, O'Neill S, et al. Preparing patients and clinicians for open notes in mental health: qualitative inquiry of international experts. JMIR Ment Health. Apr 16, 2021;8(4):e27397. [FREE Full text] [CrossRef] [Medline]71,Peck P, Torous J, Shanahan M, Fossa A, Greenberg W. Patient access to electronic psychiatric records: a pilot study. Health Policy Technol. Sep 2017;6(3):309-315. [CrossRef]76]. For example, participants in the study by Kassam et al [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54] discussed not documenting specific instances of physical abuse reported by patients experiencing domestic violence. Instead, the HCPs may imply domestic violence in the record by focusing on the safety planning they had discussed with the patient. There was agreement across HCPs and patients in the study by Pisciotta et al [Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61] that traumatic information should not be recorded in detail in the PAEHR.

HCPs identified various risks to documenting less detailed information, including that it might impact the clinical value of the EHR, particularly if the information is not detailed enough for other HCPs [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54,van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58,Turvey CL, Fuhrmeister LA, Klein DM, Moeckli J, Howren MB, Chasco EE. Patient and provider experience of electronic patient portals and secure messaging in mental health treatment. Telemed J E Health. Feb 2022;28(2):189-198. [FREE Full text] [CrossRef] [Medline]62]. HCPs in the study by van Rijt et al [van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58] considered that they are responsible for what is documented and for what is not documented, as well as the impacts these documentation choices have on the patient. Patients may also rely on their health record to access certain services or support, which may require detailed information [Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61,Denneson LM, Chen JI, Pisciotta M, Tuepker A, Dobscha SK. Patients' positive and negative responses to reading mental health clinical notes online. Psychiatr Serv. May 01, 2018;69(5):593-596. [FREE Full text] [CrossRef] [Medline]67].

Subtheme 3.2: PAEHRs Require HCPs to Document Information That Patients Will Understand

One way that HCPs changed their documentation was to reduce or reframe the use of medical terminology or jargon that patients might not understand [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54,Mayhew C, Strudwick G, Waddell J. Clinical nurse specialists’ perceptions of a mental health patient portal. Clin Nurse Spec. 2018;32(6):313-322. [CrossRef]55,Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61,Blease C, Torous J, Kharko A, DesRoches CM, Harcourt K, O'Neill S, et al. Preparing patients and clinicians for open notes in mental health: qualitative inquiry of international experts. JMIR Ment Health. Apr 16, 2021;8(4):e27397. [FREE Full text] [CrossRef] [Medline]71,Hochwarter S, Fehler G, Muente C, Eisenmann Y, Heinze M, Hibsch C, et al. Design of a patient-accessible electronic health record system in mental health. Stud Health Technol Inform. May 25, 2022;294:583-584. [CrossRef] [Medline]80]. This change was something that both HCPs reported doing [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54,Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61,Shin HD, Durocher K, Lo B, Chen S, Ma C, Wiljer D, et al. Impact of a mental health patient portal on patients’ views of compassion: a mixed-methods study. BMC Digit Health. Jan 24, 2023;1(1). [FREE Full text] [CrossRef]66,Blease C, Torous J, Kharko A, DesRoches CM, Harcourt K, O'Neill S, et al. Preparing patients and clinicians for open notes in mental health: qualitative inquiry of international experts. JMIR Ment Health. Apr 16, 2021;8(4):e27397. [FREE Full text] [CrossRef] [Medline]71] and that patients wanted HCPs to do [Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61,Shin HD, Durocher K, Lo B, Chen S, Ma C, Wiljer D, et al. Impact of a mental health patient portal on patients’ views of compassion: a mixed-methods study. BMC Digit Health. Jan 24, 2023;1(1). [FREE Full text] [CrossRef]66,Schwarz J, Meier-Diedrich E, Neumann K, Heinze M, Eisenmann Y, Thoma S. Reasons for acceptance or rejection of online record access among patients affected by a severe mental illness: mixed methods study. JMIR Ment Health. Feb 05, 2024;11:e51126. [FREE Full text] [CrossRef] [Medline]68]. In one of the few reported examples of HCPs receiving guidelines for using a PAEHR, the guidelines recommended that HCPs limit the use of abbreviations, medical language, or euphemisms, even if they may be commonly used in the medical profession [Bärkås A, Scandurra I, Hägglund M. Analysis of voluntary user feedback of the Swedish National PAEHR Service. Stud Health Technol Inform. Aug 21, 2019;264:1126-1130. [CrossRef] [Medline]81]. However, medical terminology may also be used by HCPs to communicate with other health HCPs or to disguise information from the patient [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Petersson J, Backman C. Off the record: the invisibility work of doctors in a patient-accessible electronic health record information service. Sociol Health Illn. Jun 2021;43(5):1270-1285. [CrossRef] [Medline]56]. Another approach to managing medical terminology was proactively discussing it with the patients to manage any potential confusion the terms might cause [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54].

Subtheme 3.3: PAEHRs Require HCPs to Take a Person-Centered Approach When Documenting Potentially Subjective Information

HCPs reported that they changed their documentation to be more objective and less open for interpretation in the presence of a PAEHR [van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58,Blease C, Torous J, Kharko A, DesRoches CM, Harcourt K, O'Neill S, et al. Preparing patients and clinicians for open notes in mental health: qualitative inquiry of international experts. JMIR Ment Health. Apr 16, 2021;8(4):e27397. [FREE Full text] [CrossRef] [Medline]71,Peck P, Torous J, Shanahan M, Fossa A, Greenberg W. Patient access to electronic psychiatric records: a pilot study. Health Policy Technol. Sep 2017;6(3):309-315. [CrossRef]76]. For some HCPs, this change was related to a concern that information in the record may offend patients [Johansen MA, Kummervold PE, Sørensen T, Zanaboni P. Health professionals' experience with patients accessing their electronic health records: results from an online survey. Stud Health Technol Inform. Aug 21, 2019;264:504-508. [CrossRef] [Medline]47,Chimowitz H, O'Neill S, Leveille S, Welch K, Walker J. Sharing psychotherapy notes with patients: therapists' attitudes and experiences. Soc Work. Apr 01, 2020;65(2):159-168. [CrossRef] [Medline]52]. For example, HCPs discussed the challenge of documenting a patient’s behavioral or physical presentation, which the patient could perceive as a subjective judgment [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54]. Participants in the study by Blease et al [Blease C, Torous J, Kharko A, DesRoches CM, Harcourt K, O'Neill S, et al. Preparing patients and clinicians for open notes in mental health: qualitative inquiry of international experts. JMIR Ment Health. Apr 16, 2021;8(4):e27397. [FREE Full text] [CrossRef] [Medline]71] recommended that clinicians avoid demeaning, embarrassing, or stigmatizing terms such as “patient complains of.” HCPs were conscious of medical terms that had stigmatized social meanings, such as “psychotic,” that could lead to misunderstandings with patients [Turvey CL, Fuhrmeister LA, Klein DM, Moeckli J, Howren MB, Chasco EE. Patient and provider experience of electronic patient portals and secure messaging in mental health treatment. Telemed J E Health. Feb 2022;28(2):189-198. [FREE Full text] [CrossRef] [Medline]62,Peck P, Torous J, Shanahan M, Fossa A, Greenberg W. Patient access to electronic psychiatric records: a pilot study. Health Policy Technol. Sep 2017;6(3):309-315. [CrossRef]76]. This concern meant that HCPs might not document information related to the clinician-patient relationship, the patient’s personality, or certain symptoms such as paranoia and may instead provide less detailed objective information [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54,Blease C, Kharko A, Hägglund M, O'Neill S, Wachenheim D, Salmi L, et al. The benefits and harms of open notes in mental health: a Delphi survey of international experts. PLoS One. Oct 13, 2021;16(10):e0258056. [FREE Full text] [CrossRef] [Medline]70]. However, it was recognized that some mental health assessments require subjective input from the HCP and that not including this information in the EHR might impact future episodes of care and cause confusion among the care team [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54].

HCPs across several studies acknowledged that PAEHRs encourage them to write more person-centered and empathetic information [Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53,Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54,Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61]. In the study by Kassam et al [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54], HCPs reported that the PAEHR made them conscious of language that “may be perceived as judgmental and demoralizing.” Recognizing that a negative tone could come across as judgmental, some clinicians sought to write in a tone that conveyed empathy [Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61]. This need formed part of a broader consideration that HCPs should not just highlight the deficits and issues in the record but also the strengths and unique attributes of the patient [Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61]. Some HCPs sought to document more information on patients’ strengths and recovery when using a PAEHR [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54,Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61]. Patients have reported wanting HCPs to include such information in their record [Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61]. There was an acknowledgment by HCPs that while some information may be perceived as offensive, other information was explicitly disrespectful, and PAEHRs might help minimize such language [Blease C, Kharko A, Hägglund M, O'Neill S, Wachenheim D, Salmi L, et al. The benefits and harms of open notes in mental health: a Delphi survey of international experts. PLoS One. Oct 13, 2021;16(10):e0258056. [FREE Full text] [CrossRef] [Medline]70].

It was important to patients that that the information documented in their PAEHR was respectful and empathetic. Participants in the studies by Cromer et al [Cromer R, Denneson LM, Pisciotta M, Williams H, Woods S, Dobscha SK. Trust in mental health clinicians among patients who access clinical notes online. Psychiatr Serv. May 01, 2017;68(5):520-523. [FREE Full text] [CrossRef] [Medline]38] and Fagerlund et al [Fagerlund AJ, Kristiansen E, Simonsen RA. Experiences from using patient accessible electronic health records - a qualitative study within Sámi mental health patients in Norway. Int J Circumpolar Health. Dec 17, 2022;81(1):2025682. [FREE Full text] [CrossRef] [Medline]46] wanted their health record to reflect them as a whole person rather than just containing “surface level observations.” Patients thought that HCPs could show respect by being mindful of their tone and words that may appear as judging or labeling [Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61]. In the study by Bärkås et al [Bärkås A, Kharko A, Blease C, Cajander Å, Johansen Fagerlund A, Huvila I, et al. Errors, omissions, and offenses in the health record of mental health care patients: results from a nationwide survey in Sweden. J Med Internet Res. Nov 03, 2023;25:e47841. [CrossRef] [Medline]72], a third of patients in a national survey reported feeling offended by something written in their PAEHR.

Subtheme 3.4: HCPs Limit the Documentation of Uncertain Information in PAEHRs

HCPs discussed the challenge of documenting uncertain or unfinalized information in the PAEHR, such as diagnostic hypotheses or information that had not been confirmed with the patient [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Petersson J, Backman C. Off the record: the invisibility work of doctors in a patient-accessible electronic health record information service. Sociol Health Illn. Jun 2021;43(5):1270-1285. [CrossRef] [Medline]56-van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58,Blease C, Torous J, Kharko A, DesRoches CM, Harcourt K, O'Neill S, et al. Preparing patients and clinicians for open notes in mental health: qualitative inquiry of international experts. JMIR Ment Health. Apr 16, 2021;8(4):e27397. [FREE Full text] [CrossRef] [Medline]71,Bärkås A, Scandurra I, Rexhepi H, Blease C, Cajander Å, Hägglund M. Patients' access to their psychiatric notes: current policies and practices in Sweden. Int J Environ Res Public Health. Aug 30, 2021;18(17):9140. [FREE Full text] [CrossRef] [Medline]78]. For example, HCP might avoid documenting the assessment process leading to a final diagnosis or treatment plan because a patient might read those initial notes without knowing that it is not a final decision [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53,Petersson J, Backman C. Off the record: the invisibility work of doctors in a patient-accessible electronic health record information service. Sociol Health Illn. Jun 2021;43(5):1270-1285. [CrossRef] [Medline]56]. HCPs may withhold documenting suspected diagnoses due to the risk of upsetting or alarming the patient [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54] or wait to discuss the diagnosis face-to-face with the patient before documenting it [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49]. Some studies reported cases of patients discovering a diagnosis in their record that had not been discussed with them previously [Cromer R, Denneson LM, Pisciotta M, Williams H, Woods S, Dobscha SK. Trust in mental health clinicians among patients who access clinical notes online. Psychiatr Serv. May 01, 2017;68(5):520-523. [FREE Full text] [CrossRef] [Medline]38,Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61]. However, documenting uncertain information could play an important role in collaborative care arrangements and handovers, where multiple HCPs contribute to an assessment and need access to this information [Petersson J, Backman C. Off the record: the invisibility work of doctors in a patient-accessible electronic health record information service. Sociol Health Illn. Jun 2021;43(5):1270-1285. [CrossRef] [Medline]56]. This information may also form an important part of the clinician’s work to assess a patient and formulate a diagnosis or treatment plan [Erlingsdóttir G, Petersson L, Jonnergård K. A theoretical twist on the transparency of open notes: qualitative analysis of health care professionals' free-text answers. J Med Internet Res. Sep 25, 2019;21(9):e14347. [FREE Full text] [CrossRef] [Medline]57].

Subtheme 3.5: HCPs May Omit Content or Restrict Access to PAEHRs

HCPs discussed various scenarios where information might be withheld from patients or omitted from the PAEHR [Johansen MA, Kummervold PE, Sørensen T, Zanaboni P. Health professionals' experience with patients accessing their electronic health records: results from an online survey. Stud Health Technol Inform. Aug 21, 2019;264:504-508. [CrossRef] [Medline]47,Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Chimowitz H, O'Neill S, Leveille S, Welch K, Walker J. Sharing psychotherapy notes with patients: therapists' attitudes and experiences. Soc Work. Apr 01, 2020;65(2):159-168. [CrossRef] [Medline]52,Petersson J, Backman C. Off the record: the invisibility work of doctors in a patient-accessible electronic health record information service. Sociol Health Illn. Jun 2021;43(5):1270-1285. [CrossRef] [Medline]56,van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58,Dobscha SK, Denneson LM, Jacobson LE, Williams HB, Cromer R, Woods S. VA mental health clinician experiences and attitudes toward OpenNotes. Gen Hosp Psychiatry. 2016;38:89-93. [CrossRef] [Medline]59,Turvey CL, Fuhrmeister LA, Klein DM, Moeckli J, Howren MB, Chasco EE. Patient and provider experience of electronic patient portals and secure messaging in mental health treatment. Telemed J E Health. Feb 2022;28(2):189-198. [FREE Full text] [CrossRef] [Medline]62,Blease C, Kharko A, Hägglund M, O'Neill S, Wachenheim D, Salmi L, et al. The benefits and harms of open notes in mental health: a Delphi survey of international experts. PLoS One. Oct 13, 2021;16(10):e0258056. [FREE Full text] [CrossRef] [Medline]70,Bärkås A, Scandurra I, Rexhepi H, Blease C, Cajander Å, Hägglund M. Patients' access to their psychiatric notes: current policies and practices in Sweden. Int J Environ Res Public Health. Aug 30, 2021;18(17):9140. [FREE Full text] [CrossRef] [Medline]78]. These scenarios included where patients were experiencing delusions or suicidal thoughts that could be exacerbated by access to their records [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54] or where a patient’s knowledge of a treatment plan in advance, particularly involutory treatment, may hinder the provision of that treatment [van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58]. This practice may occur either through actively omitting information from the PAEHR, maintaining information in a separate informal record not sanctioned by the health service, or recording the information in a section of the PAEHR that patients cannot access. Some PAEHRs offered functionality to restrict or hide information from patients [Johansen MA, Kummervold PE, Sørensen T, Zanaboni P. Health professionals' experience with patients accessing their electronic health records: results from an online survey. Stud Health Technol Inform. Aug 21, 2019;264:504-508. [CrossRef] [Medline]47,Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53,O'Neill S, Chimowitz H, Leveille S, Walker J. Embracing the new age of transparency: mental health patients reading their psychotherapy notes online. J Ment Health. Oct 2019;28(5):527-535. [CrossRef] [Medline]60]. Some PAEHRs provided functionality to limit patient access to information, including allowing for a delay to be implemented before patients could view information [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Bärkås A, Scandurra I, Rexhepi H, Blease C, Cajander Å, Hägglund M. Patients' access to their psychiatric notes: current policies and practices in Sweden. Int J Environ Res Public Health. Aug 30, 2021;18(17):9140. [FREE Full text] [CrossRef] [Medline]78,Bärkås A, Hägglund M, Moll J, Cajander Å, Rexhepi H, Hörhammer I, et al. Patients' access to their psychiatric records - a comparison of four countries. Stud Health Technol Inform. May 25, 2022;294:510-514. [CrossRef] [Medline]82], allowing only “signed” notes that an HCP had validated to be viewed by patients [Johansen MA, Kummervold PE, Sørensen T, Zanaboni P. Health professionals' experience with patients accessing their electronic health records: results from an online survey. Stud Health Technol Inform. Aug 21, 2019;264:504-508. [CrossRef] [Medline]47,Chimowitz H, O'Neill S, Leveille S, Welch K, Walker J. Sharing psychotherapy notes with patients: therapists' attitudes and experiences. Soc Work. Apr 01, 2020;65(2):159-168. [CrossRef] [Medline]52,Bärkås A, Scandurra I, Rexhepi H, Blease C, Cajander Å, Hägglund M. Patients' access to their psychiatric notes: current policies and practices in Sweden. Int J Environ Res Public Health. Aug 30, 2021;18(17):9140. [FREE Full text] [CrossRef] [Medline]78,Bärkås A, Hägglund M, Moll J, Cajander Å, Rexhepi H, Hörhammer I, et al. Patients' access to their psychiatric records - a comparison of four countries. Stud Health Technol Inform. May 25, 2022;294:510-514. [CrossRef] [Medline]82], or providing specific templates where HCPs could document sensitive information that patients could not view [Petersson L, Erlingsdóttir G. Open notes in Swedish psychiatric care (part 2): survey among psychiatric care professionals. JMIR Ment Health. Jun 21, 2018;5(2):e10521. [FREE Full text] [CrossRef] [Medline]65,Petersson L, Erlingsdóttir G. Open notes in Swedish psychiatric care (part 1): survey among psychiatric care professionals. JMIR Ment Health. Feb 02, 2018;5(1):e11. [FREE Full text] [CrossRef] [Medline]74,Bärkås A, Hägglund M, Moll J, Cajander Å, Rexhepi H, Hörhammer I, et al. Patients' access to their psychiatric records - a comparison of four countries. Stud Health Technol Inform. May 25, 2022;294:510-514. [CrossRef] [Medline]82]. Some HCPs in the study by Zanaboni et al [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49] mentioned keeping a physical folder with information that had not yet been included in the EHR. The risk of such unsanctioned records is that the information may be lost if not entered into the EHR or inaccessible by other HCPs [Petersson J, Backman C. Off the record: the invisibility work of doctors in a patient-accessible electronic health record information service. Sociol Health Illn. Jun 2021;43(5):1270-1285. [CrossRef] [Medline]56]. HCPs discussed the need for discretion in determining when to withhold information from patients, particularly when there is a justified reason for doing so [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54]. Other HCPs thought that patients should have access to all their health information and that all patients should have equal access to their PAEHR [Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53], a view also held by some patients [Hägglund M, Scandurra I. Usability of the Swedish accessible electronic health record: qualitative survey study. JMIR Hum Factors. Jun 23, 2022;9(2):e37192. [FREE Full text] [CrossRef] [Medline]83]. Limiting patient access to information, particularly mental health information, could perpetuate stigma and distrust of services [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54].

HCPs across several studies identified certain patients that they considered at increased risk of negative outcomes from accessing their PAEHR [Johansen MA, Kummervold PE, Sørensen T, Zanaboni P. Health professionals' experience with patients accessing their electronic health records: results from an online survey. Stud Health Technol Inform. Aug 21, 2019;264:504-508. [CrossRef] [Medline]47,Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Dobscha SK, Denneson LM, Jacobson LE, Williams HB, Cromer R, Woods S. VA mental health clinician experiences and attitudes toward OpenNotes. Gen Hosp Psychiatry. 2016;38:89-93. [CrossRef] [Medline]59,Petersson L, Erlingsdóttir G. Open notes in Swedish psychiatric care (part 2): survey among psychiatric care professionals. JMIR Ment Health. Jun 21, 2018;5(2):e10521. [FREE Full text] [CrossRef] [Medline]65,Blease C, Torous J, Kharko A, DesRoches CM, Harcourt K, O'Neill S, et al. Preparing patients and clinicians for open notes in mental health: qualitative inquiry of international experts. JMIR Ment Health. Apr 16, 2021;8(4):e27397. [FREE Full text] [CrossRef] [Medline]71,Peck P, Torous J, Shanahan M, Fossa A, Greenberg W. Patient access to electronic psychiatric records: a pilot study. Health Policy Technol. Sep 2017;6(3):309-315. [CrossRef]76]. The groups reported were those with psychosis, paranoia, high levels of suspicion, or personality disorders [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Petersson L, Erlingsdóttir G. Open notes in Swedish psychiatric care (part 2): survey among psychiatric care professionals. JMIR Ment Health. Jun 21, 2018;5(2):e10521. [FREE Full text] [CrossRef] [Medline]65,Blease C, Torous J, Kharko A, DesRoches CM, Harcourt K, O'Neill S, et al. Preparing patients and clinicians for open notes in mental health: qualitative inquiry of international experts. JMIR Ment Health. Apr 16, 2021;8(4):e27397. [FREE Full text] [CrossRef] [Medline]71]. In a pilot study of OpenNotes by Peck et al [Peck P, Torous J, Shanahan M, Fossa A, Greenberg W. Patient access to electronic psychiatric records: a pilot study. Health Policy Technol. Sep 2017;6(3):309-315. [CrossRef]76], where HCPs could choose which patients to enroll, HCPs reported choosing patients based on the severity of their illness, length of time in treatment, and psychiatric diagnosis. Similarly, in the study by Zanaboni et al [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49], HCPs in an outpatient setting discussed how they do not treat “the most challenging patients.” HCPs in the study by Kassam et al [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54] reported that their documentation practices may change with specific patients in mind, including their diagnosis and clinical program. HCPs may also consider the context, such as whether patient access during a crisis may negatively shape their engagement with mental health care services, particularly planned involuntary treatment [van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58]. Although HCPs across several studies believed that a certain subgroup of patients, either due to diagnosis or current symptoms, may be at greater risk of harm from accessing their health record, there seemed to be a lack of guidance or support for making these decisions. Thus, it may be that the available evidence does not accurately reflect the experiences of certain groups of patients if HCPs are actively not encouraging certain patients to use their PAEHR, or because studies are not being undertaken in settings with patients who have more complex conditions. This finding that HCPs may avoid involving certain patients in using their PAEHR may also explain why, in some studies, patients with certain diagnoses had lower odds of being registered for a PAEHR [Etingen B, Hogan TP, Martinez RN, Shimada S, Stroupe K, Nazi K, et al. How do patients with mental health diagnoses use online patient portals? An observational analysis from the Veterans Health Administration. Adm Policy Ment Health. Sep 2019;46(5):596-608. [CrossRef] [Medline]84-Dobscha SK, Denneson LM, Pisciotta MK, Bourne DS, Chen JI, Philipps-Moses D, et al. Predictors of viewing progress notes among users of VA's electronic health portal who receive mental health care. JAMIA Open. Jul 2018;1(1):122-127. [FREE Full text] [CrossRef] [Medline]87].

Theme 4: PAEHRs Introduce Changes to HCPs’ Information Workflows

HCPs across several studies reported that PAEHRs would or had increased their workload due to changes in documenting information, answering patient questions, and reassuring patients [Strudwick G, Clark C, Sanches M, Strauss J. Predictors of mental health professionals' perceptions of patient portals. AMIA Annu Symp Proc. 2018;2018:989-997. [FREE Full text] [Medline]10,Johansen MA, Kummervold PE, Sørensen T, Zanaboni P. Health professionals' experience with patients accessing their electronic health records: results from an online survey. Stud Health Technol Inform. Aug 21, 2019;264:504-508. [CrossRef] [Medline]47,Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Chimowitz H, O'Neill S, Leveille S, Welch K, Walker J. Sharing psychotherapy notes with patients: therapists' attitudes and experiences. Soc Work. Apr 01, 2020;65(2):159-168. [CrossRef] [Medline]52,Mayhew C, Strudwick G, Waddell J. Clinical nurse specialists’ perceptions of a mental health patient portal. Clin Nurse Spec. 2018;32(6):313-322. [CrossRef]55,van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58,Dobscha SK, Denneson LM, Jacobson LE, Williams HB, Cromer R, Woods S. VA mental health clinician experiences and attitudes toward OpenNotes. Gen Hosp Psychiatry. 2016;38:89-93. [CrossRef] [Medline]59,Petersson L, Erlingsdóttir G. Open notes in Swedish psychiatric care (part 2): survey among psychiatric care professionals. JMIR Ment Health. Jun 21, 2018;5(2):e10521. [FREE Full text] [CrossRef] [Medline]65,Schwarz J, Meier-Diedrich E, Neumann K, Heinze M, Eisenmann Y, Thoma S. Reasons for acceptance or rejection of online record access among patients affected by a severe mental illness: mixed methods study. JMIR Ment Health. Feb 05, 2024;11:e51126. [FREE Full text] [CrossRef] [Medline]68,Hochwarter S, Fehler G, Muente C, Eisenmann Y, Heinze M, Hibsch C, et al. Design of a patient-accessible electronic health record system in mental health. Stud Health Technol Inform. May 25, 2022;294:583-584. [CrossRef] [Medline]80]. However, in other studies, HCPs did not report any change to their workflow or workload [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Chimowitz H, O'Neill S, Leveille S, Welch K, Walker J. Sharing psychotherapy notes with patients: therapists' attitudes and experiences. Soc Work. Apr 01, 2020;65(2):159-168. [CrossRef] [Medline]52,Dobscha SK, Denneson LM, Jacobson LE, Williams HB, Cromer R, Woods S. VA mental health clinician experiences and attitudes toward OpenNotes. Gen Hosp Psychiatry. 2016;38:89-93. [CrossRef] [Medline]59,Petersson L, Erlingsdóttir G. Open notes in Swedish psychiatric care (part 2): survey among psychiatric care professionals. JMIR Ment Health. Jun 21, 2018;5(2):e10521. [FREE Full text] [CrossRef] [Medline]65,Blease C, Torous J, Kharko A, DesRoches CM, Harcourt K, O'Neill S, et al. Preparing patients and clinicians for open notes in mental health: qualitative inquiry of international experts. JMIR Ment Health. Apr 16, 2021;8(4):e27397. [FREE Full text] [CrossRef] [Medline]71] or suggested that changes in documentation may only require more work initially to adapt their documentation style [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54]. For example, only 14.5% (86/594) of HCPs in the study by Petersson et al [Petersson L, Erlingsdóttir G. Open notes in Swedish psychiatric care (part 2): survey among psychiatric care professionals. JMIR Ment Health. Jun 21, 2018;5(2):e10521. [FREE Full text] [CrossRef] [Medline]65] reported that appointments took longer, and 18% (106/588) reported spending more time answering patient questions. The variation in the impact of PAEHRs on HCP workflows may be related to how the PAEHR was implemented and the level of support provided to HCPs and patients. One workflow change reported was the order of communication and documentation of information [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49]. As previously discussed in subtheme 3.5, HCPs across several studies had previously used the health record to document preliminary information. The adoption of a PAEHR led HCPs to document this preliminary information elsewhere or not at all or to have earlier discussions with the patient about this information [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Petersson J, Backman C. Off the record: the invisibility work of doctors in a patient-accessible electronic health record information service. Sociol Health Illn. Jun 2021;43(5):1270-1285. [CrossRef] [Medline]56-van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58,Blease C, Torous J, Kharko A, DesRoches CM, Harcourt K, O'Neill S, et al. Preparing patients and clinicians for open notes in mental health: qualitative inquiry of international experts. JMIR Ment Health. Apr 16, 2021;8(4):e27397. [FREE Full text] [CrossRef] [Medline]71,Bärkås A, Scandurra I, Rexhepi H, Blease C, Cajander Å, Hägglund M. Patients' access to their psychiatric notes: current policies and practices in Sweden. Int J Environ Res Public Health. Aug 30, 2021;18(17):9140. [FREE Full text] [CrossRef] [Medline]78]. Another workflow issue raised by HCPs in the study by van Rijt et al [van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58] was the time required to explain what is written in the PAEHR and update the PAEHR if a patient disagreed with what was documented. In some cases, workflow issues were related to technical issues with the PAEHR, such as slow sign-in or troubleshooting technical issues for patients [Forchuk C, Rudnick A, Hoch J, Donelle L, Campbell R, Osaka W, et al. Mental health engagement network: innovating community-based mental healthcare. J Gen Pract. 2014;02(01). [FREE Full text] [CrossRef]88]. Interestingly, patients in the study by Schwarz et al [Schwarz J, Meier-Diedrich E, Neumann K, Heinze M, Eisenmann Y, Thoma S. Reasons for acceptance or rejection of online record access among patients affected by a severe mental illness: mixed methods study. JMIR Ment Health. Feb 05, 2024;11:e51126. [FREE Full text] [CrossRef] [Medline]68] were concerned that the PAEHR might undermine the trust established with their HCP partly due to an increased HCP workload.

Theme 5: HCPs Require Tailored Training, Education, and Guidelines Documenting Information in a PAEHR

There was a clear lack of support and guidelines for HCPs across the included studies [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53,Gasteiger N, Fleming T, Day K. Converging perspectives of providers and student users on extending a patient portal into a university-based mental health service: a qualitative study. Internet Interv. Mar 2020;19:100304. [FREE Full text] [CrossRef] [Medline]75]. As outlined in theme 1, PAEHRs were viewed by HCPs as contrary to how they were trained. Several studies discussed the need for HCPs to receive training and support in using and promoting PAEHRs, such as how to write notes appropriately for patients [Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53,Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61,Dobscha SK, Kenyon EA, Pisciotta MK, Niederhausen M, Woods S, Denneson LM. Impacts of a web-based course on mental health clinicians' attitudes and communication behaviors related to use of OpenNotes. Psychiatr Serv. Jun 01, 2019;70(6):474-479. [CrossRef] [Medline]73,Gasteiger N, Fleming T, Day K. Converging perspectives of providers and student users on extending a patient portal into a university-based mental health service: a qualitative study. Internet Interv. Mar 2020;19:100304. [FREE Full text] [CrossRef] [Medline]75,Eyasu T, Leung K, Strudwick G. Guiding improvements in user experience: results of a mental health patient portal user interface assessment. Stud Health Technol Inform. 2019;257:110-114. [Medline]89,Robotham D, Mayhew M, Rose D, Wykes T. Electronic personal health records for people with severe mental illness; a feasibility study. BMC Psychiatry. Aug 06, 2015;15:192. [FREE Full text] [CrossRef] [Medline]90]. Some of the issues identified as requiring guidance included describing sensitive matters and writing information “that may potentially be perceived in a negative light in a way that is clinically appropriate and respectful” [Blease C, Torous J, Kharko A, DesRoches CM, Harcourt K, O'Neill S, et al. Preparing patients and clinicians for open notes in mental health: qualitative inquiry of international experts. JMIR Ment Health. Apr 16, 2021;8(4):e27397. [FREE Full text] [CrossRef] [Medline]71]. When guidance was unavailable, HCPs took a risk-averse approach by adopting the information practices outlined in theme 3, such as reducing the level of detail documented about patients.

The few studies that included training for HCPs found mixed results regarding its effectiveness. Dobscha et al [Dobscha SK, Kenyon EA, Pisciotta MK, Niederhausen M, Woods S, Denneson LM. Impacts of a web-based course on mental health clinicians' attitudes and communication behaviors related to use of OpenNotes. Psychiatr Serv. Jun 01, 2019;70(6):474-479. [CrossRef] [Medline]73], reporting on a study of web-based education programs for HCPs using OpenNotes, found that after training, clinicians were better able to communicate, educate, and advise patients on accessing and reading their notes. The training also reduced HCPs’ concerns regarding the potential negative outcomes of OpenNotes. However, HCPs in the study by Zanaboni et al [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49] who also completed internet-based learning modules discussed how they would like more formal training in using the PAEHR, as their memories of the online training were vague. HCPs in the study by Jonnergård et al [Jonnergård K, Petersson L, Erlingsdóttir G. Communicating the implementation of open notes to health care professionals: mixed methods study. JMIR Med Inform. Aug 16, 2021;9(8):e22391. [FREE Full text] [CrossRef] [Medline]63] identified that HCPs preferred to receive information about OpenNotes via channels that allowed for dialogue and rich information, such as workplace meetings.

Theme 6: Patients Are Empowered With New Information Practices if They Are Supported to Use Their PAEHR
Overview

Many studies reported improvements in patient empowerment or the perception of improved empowerment with the adoption of PAEHRs. Empowerment included improvements in self-monitoring; medication management and self-management of conditions; increased engagement with health care providers, health screening, and care plans; improved understanding of and insight into one’s mental health; and feeling more prepared to engage with HCPs [Durocher K, Shin HD, Lo B, Chen S, Ma C, Strudwick G. Understanding the role of patient portals in fostering interprofessional collaboration within mental health care settings: mixed methods study. JMIR Hum Factors. Jul 19, 2023;10:e44747. [FREE Full text] [CrossRef] [Medline]37,Fisher B, Bhavnani V, Winfield M. How patients use access to their full health records: a qualitative study of patients in general practice. J R Soc Med. Dec 2009;102(12):539-544. [FREE Full text] [CrossRef] [Medline]50,Chimowitz H, O'Neill S, Leveille S, Welch K, Walker J. Sharing psychotherapy notes with patients: therapists' attitudes and experiences. Soc Work. Apr 01, 2020;65(2):159-168. [CrossRef] [Medline]52,Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54,Erlingsdóttir G, Petersson L, Jonnergård K. A theoretical twist on the transparency of open notes: qualitative analysis of health care professionals' free-text answers. J Med Internet Res. Sep 25, 2019;21(9):e14347. [FREE Full text] [CrossRef] [Medline]57,Dobscha SK, Denneson LM, Jacobson LE, Williams HB, Cromer R, Woods S. VA mental health clinician experiences and attitudes toward OpenNotes. Gen Hosp Psychiatry. 2016;38:89-93. [CrossRef] [Medline]59,Denneson LM, Chen JI, Pisciotta M, Tuepker A, Dobscha SK. Patients' positive and negative responses to reading mental health clinical notes online. Psychiatr Serv. May 01, 2018;69(5):593-596. [FREE Full text] [CrossRef] [Medline]67,Schwarz J, Meier-Diedrich E, Neumann K, Heinze M, Eisenmann Y, Thoma S. Reasons for acceptance or rejection of online record access among patients affected by a severe mental illness: mixed methods study. JMIR Ment Health. Feb 05, 2024;11:e51126. [FREE Full text] [CrossRef] [Medline]68,Dobscha SK, Kenyon EA, Pisciotta MK, Niederhausen M, Woods S, Denneson LM. Impacts of a web-based course on mental health clinicians' attitudes and communication behaviors related to use of OpenNotes. Psychiatr Serv. Jun 01, 2019;70(6):474-479. [CrossRef] [Medline]73,Peck P, Torous J, Shanahan M, Fossa A, Greenberg W. Patient access to electronic psychiatric records: a pilot study. Health Policy Technol. Sep 2017;6(3):309-315. [CrossRef]76,Strudwick G, Booth RG, McLean D, Leung K, Rossetti S, McCann M, et al. Identifying indicators of meaningful patient portal use by psychiatric populations. Inform Health Soc Care. Oct 01, 2020;45(4):396-409. [CrossRef] [Medline]77,Robotham D, Mayhew M, Rose D, Wykes T. Electronic personal health records for people with severe mental illness; a feasibility study. BMC Psychiatry. Aug 06, 2015;15:192. [FREE Full text] [CrossRef] [Medline]90-Blease C, Dong Z, Torous J, Walker J, Hägglund M, DesRoches CM. Association of patients reading clinical notes with perception of medication adherence among persons with serious mental illness. JAMA Netw Open. Mar 01, 2021;4(3):e212823. [FREE Full text] [CrossRef] [Medline]95]. For example, patients in the study by Shin et al [Shin HD, Durocher K, Lo B, Chen S, Ma C, Wiljer D, et al. Impact of a mental health patient portal on patients’ views of compassion: a mixed-methods study. BMC Digit Health. Jan 24, 2023;1(1). [FREE Full text] [CrossRef]66] reported that seeing their health record made them feel involved in the health care process, which was empowering. HCPs in the study by Kassam et al [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54] thought PAEHRs helped dismantle power imbalances between patients and HCPs, fostering patient empowerment. Many of these studies were patients’ self-reports or clinicians’ perceptions of increased empowerment. However, Kipping et al [Kipping S, Stuckey MI, Hernandez A, Nguyen T, Riahi S. A web-based patient portal for mental health care: benefits evaluation. J Med Internet Res. Nov 16, 2016;18(11):e294. [FREE Full text] [CrossRef] [Medline]92] found that, when comparing patient portal users with nonusers, those who used the portal had increased appointment attendance, self-reported autonomy, and patient activation. Furthermore, in a randomized control trial, Druss et al [Druss BG, Ji X, Glick G, von Esenwein SA. Randomized trial of an electronic personal health record for patients with serious mental illnesses. Am J Psychiatry. Mar 2014;171(3):360-368. [CrossRef] [Medline]96,Druss BG, Li J, Tapscott S, Lally CA. Randomized trial of a mobile personal health record for behavioral health homes. Psychiatr Serv. Aug 01, 2020;71(8):803-809. [FREE Full text] [CrossRef] [Medline]97] found that personal health record users had increased engagement with preventative health services.

PAEHRs could also support patients’ engagement with information by acting as a reference tool, supporting their preparation for and engagement in clinical encounters, reminding them of previous discussions with HCPs, and helping them keep track of their treatment [Durocher K, Shin HD, Lo B, Chen S, Ma C, Strudwick G. Understanding the role of patient portals in fostering interprofessional collaboration within mental health care settings: mixed methods study. JMIR Hum Factors. Jul 19, 2023;10:e44747. [FREE Full text] [CrossRef] [Medline]37,Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Chimowitz H, O'Neill S, Leveille S, Welch K, Walker J. Sharing psychotherapy notes with patients: therapists' attitudes and experiences. Soc Work. Apr 01, 2020;65(2):159-168. [CrossRef] [Medline]52,Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54,Erlingsdóttir G, Petersson L, Jonnergård K. A theoretical twist on the transparency of open notes: qualitative analysis of health care professionals' free-text answers. J Med Internet Res. Sep 25, 2019;21(9):e14347. [FREE Full text] [CrossRef] [Medline]57-Dobscha SK, Denneson LM, Jacobson LE, Williams HB, Cromer R, Woods S. VA mental health clinician experiences and attitudes toward OpenNotes. Gen Hosp Psychiatry. 2016;38:89-93. [CrossRef] [Medline]59,Shin HD, Durocher K, Lo B, Chen S, Ma C, Wiljer D, et al. Impact of a mental health patient portal on patients’ views of compassion: a mixed-methods study. BMC Digit Health. Jan 24, 2023;1(1). [FREE Full text] [CrossRef]66,Schwarz J, Meier-Diedrich E, Neumann K, Heinze M, Eisenmann Y, Thoma S. Reasons for acceptance or rejection of online record access among patients affected by a severe mental illness: mixed methods study. JMIR Ment Health. Feb 05, 2024;11:e51126. [FREE Full text] [CrossRef] [Medline]68,Blease C, Kharko A, Hägglund M, O'Neill S, Wachenheim D, Salmi L, et al. The benefits and harms of open notes in mental health: a Delphi survey of international experts. PLoS One. Oct 13, 2021;16(10):e0258056. [FREE Full text] [CrossRef] [Medline]70,Forchuk C, Reiss JP, O'Regan T, Ethridge P, Donelle L, Rudnick A. Client perceptions of the mental health engagement network: a qualitative analysis of an electronic personal health record. BMC Psychiatry. Oct 14, 2015;15:250. [FREE Full text] [CrossRef] [Medline]98]. PAEHRs may also improve patients’ knowledge of their health status, treatment, and medications [Johansen MA, Kummervold PE, Sørensen T, Zanaboni P. Health professionals' experience with patients accessing their electronic health records: results from an online survey. Stud Health Technol Inform. Aug 21, 2019;264:504-508. [CrossRef] [Medline]47,Mayhew C, Strudwick G, Waddell J. Clinical nurse specialists’ perceptions of a mental health patient portal. Clin Nurse Spec. 2018;32(6):313-322. [CrossRef]55,van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58,Denneson LM, Chen JI, Pisciotta M, Tuepker A, Dobscha SK. Patients' positive and negative responses to reading mental health clinical notes online. Psychiatr Serv. May 01, 2018;69(5):593-596. [FREE Full text] [CrossRef] [Medline]67,Blease C, Dong Z, Torous J, Walker J, Hägglund M, DesRoches CM. Association of patients reading clinical notes with perception of medication adherence among persons with serious mental illness. JAMA Netw Open. Mar 01, 2021;4(3):e212823. [FREE Full text] [CrossRef] [Medline]95]; increase the number of contacts with HCPs and the completion of follow-up assessments [Pecina J, North F, Williams MD, Angstman KB. Use of an on-line patient portal in a depression collaborative care management program. J Affect Disord. Jan 15, 2017;208:1-5. [CrossRef] [Medline]94]; encourage patients to ask more questions about their treatment [Turvey CL, Fuhrmeister LA, Klein DM, Moeckli J, Howren MB, Chasco EE. Patient and provider experience of electronic patient portals and secure messaging in mental health treatment. Telemed J E Health. Feb 2022;28(2):189-198. [FREE Full text] [CrossRef] [Medline]62]; and help prepare them to discuss their treatment with an HCP [Durocher K, Shin HD, Lo B, Chen S, Ma C, Strudwick G. Understanding the role of patient portals in fostering interprofessional collaboration within mental health care settings: mixed methods study. JMIR Hum Factors. Jul 19, 2023;10:e44747. [FREE Full text] [CrossRef] [Medline]37,Fisher B, Bhavnani V, Winfield M. How patients use access to their full health records: a qualitative study of patients in general practice. J R Soc Med. Dec 2009;102(12):539-544. [FREE Full text] [CrossRef] [Medline]50,van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58]. The transparency promoted by the PAEHR, as discussed in subtheme 2.3, can also help patients track how their care is progressing [Hägglund M, Scandurra I. Usability of the Swedish accessible electronic health record: qualitative survey study. JMIR Hum Factors. Jun 23, 2022;9(2):e37192. [FREE Full text] [CrossRef] [Medline]83]. Patients may also use the PAEHR to validate communications from their HCP and clarify information after a clinical encounter [Chimowitz H, O'Neill S, Leveille S, Welch K, Walker J. Sharing psychotherapy notes with patients: therapists' attitudes and experiences. Soc Work. Apr 01, 2020;65(2):159-168. [CrossRef] [Medline]52,Shin HD, Durocher K, Lo B, Chen S, Ma C, Wiljer D, et al. Impact of a mental health patient portal on patients’ views of compassion: a mixed-methods study. BMC Digit Health. Jan 24, 2023;1(1). [FREE Full text] [CrossRef]66]. However, some patients were concerned that PAEHRs would replace face-to-face conversations with their HCPs [Shin HD, Durocher K, Lo B, Chen S, Ma C, Wiljer D, et al. Impact of a mental health patient portal on patients’ views of compassion: a mixed-methods study. BMC Digit Health. Jan 24, 2023;1(1). [FREE Full text] [CrossRef]66].

In most studies that explored the rates of PAEHR adoption, the engagement of patients was low [Etingen B, Hogan TP, Martinez RN, Shimada S, Stroupe K, Nazi K, et al. How do patients with mental health diagnoses use online patient portals? An observational analysis from the Veterans Health Administration. Adm Policy Ment Health. Sep 2019;46(5):596-608. [CrossRef] [Medline]84,Abel EA, Shimada SL, Wang K, Ramsey C, Skanderson M, Erdos J, et al. Dual use of a patient portal and clinical video telehealth by veterans with mental health diagnoses: retrospective, cross-sectional analysis. J Med Internet Res. Nov 07, 2018;20(11):e11350. [FREE Full text] [CrossRef] [Medline]85,Kipping S, Stuckey MI, Hernandez A, Nguyen T, Riahi S. A web-based patient portal for mental health care: benefits evaluation. J Med Internet Res. Nov 16, 2016;18(11):e294. [FREE Full text] [CrossRef] [Medline]92,Nazi KM, Turvey CL, Klein DM, Hogan TP, Woods SS. VA OpenNotes: exploring the experiences of early patient adopters with access to clinical notes. J Am Med Inform Assoc. Mar 2015;22(2):380-389. [CrossRef] [Medline]99,Tsai J, Rosenheck RA. Use of the internet and an online personal health record system by US veterans: comparison of Veterans Affairs mental health service users and other veterans nationally. J Am Med Inform Assoc. 2012;19(6):1089-1094. [FREE Full text] [CrossRef] [Medline]100]. Connolly et al [Connolly SL, Etingen B, Shimada SL, Hogan TP, Nazi K, Stroupe K, et al. Patient portal use among veterans with depression: associations with symptom severity and demographic characteristics. J Affect Disord. Oct 01, 2020;275:255-259. [FREE Full text] [CrossRef] [Medline]101] found in a study of veterans with depression that only 21.9% (~669/3053) were registered for their My HealtheVet platform. HCPs across several studies also reported low PAEHR adoption and patient engagement with their PAEHR [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Chimowitz H, O'Neill S, Leveille S, Welch K, Walker J. Sharing psychotherapy notes with patients: therapists' attitudes and experiences. Soc Work. Apr 01, 2020;65(2):159-168. [CrossRef] [Medline]52,Erlingsdóttir G, Petersson L, Jonnergård K. A theoretical twist on the transparency of open notes: qualitative analysis of health care professionals' free-text answers. J Med Internet Res. Sep 25, 2019;21(9):e14347. [FREE Full text] [CrossRef] [Medline]57,Kelly EL, Braslow JT, Brekke JS. Using electronic health records to enhance a peer health navigator intervention: a randomized pilot test for individuals with serious mental illness and housing instability. Community Ment Health J. Nov 3, 2018;54(8):1172-1179. [FREE Full text] [CrossRef] [Medline]93]. There were mixed findings on the demographic groups that were more likely to access their PAEHR. Connolly et al [Connolly SL, Etingen B, Shimada SL, Hogan TP, Nazi K, Stroupe K, et al. Patient portal use among veterans with depression: associations with symptom severity and demographic characteristics. J Affect Disord. Oct 01, 2020;275:255-259. [FREE Full text] [CrossRef] [Medline]101] found that patients with more severe symptoms were more likely to register for and download information from their patient portal. Some studies suggest that people with mental health conditions may be more likely to use a PAEHR [Bärkås A, Kharko A, Blease C, Cajander Å, Johansen Fagerlund A, Huvila I, et al. Errors, omissions, and offenses in the health record of mental health care patients: results from a nationwide survey in Sweden. J Med Internet Res. Nov 03, 2023;25:e47841. [CrossRef] [Medline]72,Kim EH, Kim Y. Digital divide: use of electronic personal health record by different population groups. Annu Int Conf IEEE Eng Med Biol Soc. 2010;2010:1759-1762. [CrossRef] [Medline]102], but this was not consistent across all studies [Raps SJ, Chen D, Bakken S, Caban J, Engler MB. Baseline eHealth behaviors of service members: a retrospective, cross-sectional analysis of patient portal use before the pandemic. Mil Med. Jul 22, 2023;188(7-8):e2598-e2605. [FREE Full text] [CrossRef] [Medline]103]. PAEHR use may increase over time, with Onyeaka et al [Onyeaka H, Ajayi KV, Muoghalu C, Eseaton PO, Azuike CO, Anugwom G, et al. Access to online patient portals among individuals with depression and anxiety. Psychiatry Res Commun. Dec 2022;2(4):100073. [FREE Full text] [CrossRef]12] finding in a national survey in the United States of people with depression and anxiety that patient portal use had increased from approximately a third to a half of respondents over 3 years. There were variable results regarding whether people with different diagnoses were more likely to use a PAEHR. Etingen et al [Etingen B, Hogan TP, Martinez RN, Shimada S, Stroupe K, Nazi K, et al. How do patients with mental health diagnoses use online patient portals? An observational analysis from the Veterans Health Administration. Adm Policy Ment Health. Sep 2019;46(5):596-608. [CrossRef] [Medline]84] suggested that differences in use across diagnoses may be due to some diagnoses being more likely to be associated with other comorbidities, which may encourage or facilitate engagement with the PAEHR.

Interestingly, in studies that explored the functions of PAEHRs used by patients, viewing their health records is not always the primary use [Onyeaka H, Ajayi KV, Muoghalu C, Eseaton PO, Azuike CO, Anugwom G, et al. Access to online patient portals among individuals with depression and anxiety. Psychiatry Res Commun. Dec 2022;2(4):100073. [FREE Full text] [CrossRef]12,Etingen B, Hogan TP, Martinez RN, Shimada S, Stroupe K, Nazi K, et al. How do patients with mental health diagnoses use online patient portals? An observational analysis from the Veterans Health Administration. Adm Policy Ment Health. Sep 2019;46(5):596-608. [CrossRef] [Medline]84,Connolly SL, Etingen B, Shimada SL, Hogan TP, Nazi K, Stroupe K, et al. Patient portal use among veterans with depression: associations with symptom severity and demographic characteristics. J Affect Disord. Oct 01, 2020;275:255-259. [FREE Full text] [CrossRef] [Medline]101]. In many cases, other functions, such as medication refills and booking and viewing appointments, are used most [Etingen B, Hogan TP, Martinez RN, Shimada S, Stroupe K, Nazi K, et al. How do patients with mental health diagnoses use online patient portals? An observational analysis from the Veterans Health Administration. Adm Policy Ment Health. Sep 2019;46(5):596-608. [CrossRef] [Medline]84]. Robotham [Robotham D, Mayhew M, Rose D, Wykes T. Electronic personal health records for people with severe mental illness; a feasibility study. BMC Psychiatry. Aug 06, 2015;15:192. [FREE Full text] [CrossRef] [Medline]90] and Forchuk et al [Forchuk C, Reiss JP, O'Regan T, Ethridge P, Donelle L, Rudnick A. Client perceptions of the mental health engagement network: a qualitative analysis of an electronic personal health record. BMC Psychiatry. Oct 14, 2015;15:250. [FREE Full text] [CrossRef] [Medline]98] also found that patients value visual representations of, and the ability to track changes in, their health information.

Only a few studies discussed patients documenting information in their PAEHR [Durocher K, Shin HD, Lo B, Chen S, Ma C, Strudwick G. Understanding the role of patient portals in fostering interprofessional collaboration within mental health care settings: mixed methods study. JMIR Hum Factors. Jul 19, 2023;10:e44747. [FREE Full text] [CrossRef] [Medline]37,Mayhew C, Strudwick G, Waddell J. Clinical nurse specialists’ perceptions of a mental health patient portal. Clin Nurse Spec. 2018;32(6):313-322. [CrossRef]55,Shin HD, Durocher K, Lo B, Chen S, Ma C, Wiljer D, et al. Impact of a mental health patient portal on patients’ views of compassion: a mixed-methods study. BMC Digit Health. Jan 24, 2023;1(1). [FREE Full text] [CrossRef]66]. Patient-documented information is not a feature of all PAEHR systems, but some patients saw value in this functionality. For example, patients in the study by Shin et al [Shin HD, Durocher K, Lo B, Chen S, Ma C, Wiljer D, et al. Impact of a mental health patient portal on patients’ views of compassion: a mixed-methods study. BMC Digit Health. Jan 24, 2023;1(1). [FREE Full text] [CrossRef]66] discussed how being able to report information in the PAEHR might help HCPs better understand their needs. In the study by Durocher et al [Durocher K, Shin HD, Lo B, Chen S, Ma C, Strudwick G. Understanding the role of patient portals in fostering interprofessional collaboration within mental health care settings: mixed methods study. JMIR Hum Factors. Jul 19, 2023;10:e44747. [FREE Full text] [CrossRef] [Medline]37], 1 participant thought it would be valuable if they could flag notes in the PAEHR and provide their interpretations of certain events.

Subtheme 6.1: Patients Need Support to Use Their PAEHR

Patients were more likely to access their PAEHR when HCPs spoke to them about accessing their PAEHR and when they understood its purpose [Dobscha SK, Denneson LM, Pisciotta MK, Bourne DS, Chen JI, Philipps-Moses D, et al. Predictors of viewing progress notes among users of VA's electronic health portal who receive mental health care. JAMIA Open. Jul 2018;1(1):122-127. [FREE Full text] [CrossRef] [Medline]87]. However, in several studies, HCPs took a passive approach by letting patients figure out how to access and read their health record themselves [Johansen MA, Kummervold PE, Sørensen T, Zanaboni P. Health professionals' experience with patients accessing their electronic health records: results from an online survey. Stud Health Technol Inform. Aug 21, 2019;264:504-508. [CrossRef] [Medline]47,Chimowitz H, O'Neill S, Leveille S, Welch K, Walker J. Sharing psychotherapy notes with patients: therapists' attitudes and experiences. Soc Work. Apr 01, 2020;65(2):159-168. [CrossRef] [Medline]52,Dobscha SK, Denneson LM, Jacobson LE, Williams HB, Cromer R, Woods S. VA mental health clinician experiences and attitudes toward OpenNotes. Gen Hosp Psychiatry. 2016;38:89-93. [CrossRef] [Medline]59,Petersson L, Erlingsdóttir G. Open notes in Swedish psychiatric care (part 2): survey among psychiatric care professionals. JMIR Ment Health. Jun 21, 2018;5(2):e10521. [FREE Full text] [CrossRef] [Medline]65]. In some studies, it appeared that not all HCPs had discussed the PAEHR with their patients; for example, 40% (82/205) of participants in the study by Dobscha et al [Dobscha SK, Denneson LM, Jacobson LE, Williams HB, Cromer R, Woods S. VA mental health clinician experiences and attitudes toward OpenNotes. Gen Hosp Psychiatry. 2016;38:89-93. [CrossRef] [Medline]59] had not discussed it with their patients, and only a few participants reported having multiple conversations with patients about it. Similarly, in the study by Johansen et al [Johansen MA, Kummervold PE, Sørensen T, Zanaboni P. Health professionals' experience with patients accessing their electronic health records: results from an online survey. Stud Health Technol Inform. Aug 21, 2019;264:504-508. [CrossRef] [Medline]47], 50.8% (~169/332) of the HCPs surveyed reported that they informed patients that they could read their own EHR. In the study by Petersson et al [Petersson L, Erlingsdóttir G. Open notes in Swedish psychiatric care (part 2): survey among psychiatric care professionals. JMIR Ment Health. Jun 21, 2018;5(2):e10521. [FREE Full text] [CrossRef] [Medline]65] study, only 26.8% (180/671) of the HCPs encouraged patients to read their PAEHR, while 15.6% (105/671) initiated a discussion with patients about something in their PAEHR, and only 10% (67/670) used the PAEHR actively in treatment. This issue was also reflected in the study by Fagerlund [Fagerlund AJ, Kristiansen E, Simonsen RA. Experiences from using patient accessible electronic health records - a qualitative study within Sámi mental health patients in Norway. Int J Circumpolar Health. Dec 17, 2022;81(1):2025682. [FREE Full text] [CrossRef] [Medline]46], where patients could not recall being informed about the PAEHR and instead had heard about it through advertisements or media coverage. In addition, Leung et al [Leung K, Clark C, Sakal M, Friesen M, Strudwick G. Patient and family member readiness, needs, and perceptions of a mental health patient portal: a mixed methods study. Stud Health Technol Inform. 2019;257:266-270. [Medline]104] found that 50% (~51/103) of patients surveyed were aware that they could access their health records, while Bärkås et al [Bärkås A, Kharko A, Blease C, Cajander Å, Johansen Fagerlund A, Huvila I, et al. Errors, omissions, and offenses in the health record of mental health care patients: results from a nationwide survey in Sweden. J Med Internet Res. Nov 03, 2023;25:e47841. [CrossRef] [Medline]72] found that 64.77% (2028/3131) of patients in a national survey in Sweden had not been encouraged by anyone to read their PAEHR.

It is unclear why HCPs are not discussing the PAEHR with patients. Earlier themes might suggest that this finding is related to the perceived risks of PAEHR to patients or the lack of support for HCPs [Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53,Dobscha SK, Denneson LM, Jacobson LE, Williams HB, Cromer R, Woods S. VA mental health clinician experiences and attitudes toward OpenNotes. Gen Hosp Psychiatry. 2016;38:89-93. [CrossRef] [Medline]59]. Some HCPs in the study by Zanaboni et al [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49] suggested that the PAEHR is the patient’s tool, and therefore, the patient had to take the lead in using the PAEHR, rather than it being driven by the HCP. This perception of the PAEHR not being the HCP’s responsibility may be supported by a lack of training or information for HCPs [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49].

Several studies implemented a PAEHR as part of an intervention or model of care, which appeared to lead to increased use by patients. For example, Weisner et al [Weisner CM, Chi FW, Lu Y, Ross TB, Wood SB, Hinman A, et al. Examination of the effects of an intervention aiming to link patients receiving addiction treatment with health care: the LINKAGE clinical trial. JAMA Psychiatry. Aug 01, 2016;73(8):804-814. [FREE Full text] [CrossRef] [Medline]105] found that patients in an intervention that involved six 45-minute sessions with a psychologist focused on patient education and activation had greater log-ins to a patient portal and checking of information in the portal than those not involved in the intervention. Kelly et al [Kelly EL, Braslow JT, Brekke JS. Using electronic health records to enhance a peer health navigator intervention: a randomized pilot test for individuals with serious mental illness and housing instability. Community Ment Health J. Nov 3, 2018;54(8):1172-1179. [FREE Full text] [CrossRef] [Medline]93] found in a randomized controlled trial that patients were more likely to access a PAEHR when it was implemented alongside support from a peer navigator. Druss et al [Druss BG, Li J, Tapscott S, Lally CA. Randomized trial of a mobile personal health record for behavioral health homes. Psychiatr Serv. Aug 01, 2020;71(8):803-809. [FREE Full text] [CrossRef] [Medline]97] also found that peer specialist involvement might contribute to higher PAEHR use.

Providing educational resources and support may help patients engage with their PAEHR. Kelly et al [Kelly EL, Braslow JT, Brekke JS. Using electronic health records to enhance a peer health navigator intervention: a randomized pilot test for individuals with serious mental illness and housing instability. Community Ment Health J. Nov 3, 2018;54(8):1172-1179. [FREE Full text] [CrossRef] [Medline]93], when comparing low engagement in their study with higher engagement in the study by Druss et al [Druss BG, Ji X, Glick G, von Esenwein SA. Randomized trial of an electronic personal health record for patients with serious mental illnesses. Am J Psychiatry. Mar 2014;171(3):360-368. [CrossRef] [Medline]96], noted that the latter provided more intense resources and support to patients. Denneson et al [Denneson LM, Pisciotta M, Hooker ER, Trevino A, Dobscha SK. Impacts of a web-based educational program for veterans who read their mental health notes online. J Am Med Inform Assoc. Jan 01, 2019;26(1):3-8. [FREE Full text] [CrossRef] [Medline]106] found in implementing a web-based education program for patients who accessed their health record on the internet that the training improved patients’ interactions and communication with HCPs and their own “activation.” The web-based program included information on what is included in their health record and how to use and communicate with clinicians about them.

Subtheme 6.2: PAEHRs Must Be Easy for Patients to Navigate, Access, and Understand

Several studies explored design requirements for PAEHRs and identified issues and opportunities to make it easier for patients to use their PAEHR [Onyeaka H, Ajayi KV, Muoghalu C, Eseaton PO, Azuike CO, Anugwom G, et al. Access to online patient portals among individuals with depression and anxiety. Psychiatry Res Commun. Dec 2022;2(4):100073. [FREE Full text] [CrossRef]12,Pisciotta M, Denneson LM, Williams HB, Woods S, Tuepker A, Dobscha SK. Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians. J Ment Health. Feb 2019;28(1):64-70. [CrossRef] [Medline]61,Dobscha SK, Kenyon EA, Pisciotta MK, Niederhausen M, Woods S, Denneson LM. Impacts of a web-based course on mental health clinicians' attitudes and communication behaviors related to use of OpenNotes. Psychiatr Serv. Jun 01, 2019;70(6):474-479. [CrossRef] [Medline]73,Gasteiger N, Fleming T, Day K. Converging perspectives of providers and student users on extending a patient portal into a university-based mental health service: a qualitative study. Internet Interv. Mar 2020;19:100304. [FREE Full text] [CrossRef] [Medline]75,Eyasu T, Leung K, Strudwick G. Guiding improvements in user experience: results of a mental health patient portal user interface assessment. Stud Health Technol Inform. 2019;257:110-114. [Medline]89,Robotham D, Mayhew M, Rose D, Wykes T. Electronic personal health records for people with severe mental illness; a feasibility study. BMC Psychiatry. Aug 06, 2015;15:192. [FREE Full text] [CrossRef] [Medline]90,Forchuk C, Reiss JP, O'Regan T, Ethridge P, Donelle L, Rudnick A. Client perceptions of the mental health engagement network: a qualitative analysis of an electronic personal health record. BMC Psychiatry. Oct 14, 2015;15:250. [FREE Full text] [CrossRef] [Medline]98,Ennis L, Robotham D, Denis M, Pandit N, Newton D, Rose D, et al. Collaborative development of an electronic Personal Health Record for people with severe and enduring mental health problems. BMC Psychiatry. Nov 18, 2014;14:305. [FREE Full text] [CrossRef] [Medline]107,Hilton JF, Barkoff L, Chang O, Halperin L, Ratanawongsa N, Sarkar U, et al. A cross-sectional study of barriers to personal health record use among patients attending a safety-net clinic. PLoS One. 2012;7(2):e31888. [FREE Full text] [CrossRef] [Medline]108]. Several studies identified login and account setup processes as an issue for patients, with recommendations that the process should be simplified, including addressing issues such as remembering passwords [Onyeaka H, Ajayi KV, Muoghalu C, Eseaton PO, Azuike CO, Anugwom G, et al. Access to online patient portals among individuals with depression and anxiety. Psychiatry Res Commun. Dec 2022;2(4):100073. [FREE Full text] [CrossRef]12,Gasteiger N, Fleming T, Day K. Converging perspectives of providers and student users on extending a patient portal into a university-based mental health service: a qualitative study. Internet Interv. Mar 2020;19:100304. [FREE Full text] [CrossRef] [Medline]75,Hägglund M, Scandurra I. Usability of the Swedish accessible electronic health record: qualitative survey study. JMIR Hum Factors. Jun 23, 2022;9(2):e37192. [FREE Full text] [CrossRef] [Medline]83,Eyasu T, Leung K, Strudwick G. Guiding improvements in user experience: results of a mental health patient portal user interface assessment. Stud Health Technol Inform. 2019;257:110-114. [Medline]89,Forchuk C, Reiss JP, O'Regan T, Ethridge P, Donelle L, Rudnick A. Client perceptions of the mental health engagement network: a qualitative analysis of an electronic personal health record. BMC Psychiatry. Oct 14, 2015;15:250. [FREE Full text] [CrossRef] [Medline]98,Forchuk C, Rudnick A, Hoch J, Donelle L, Godin M, Osoka W, et al. Mental Health Engagement Network (MHEN). Int J Adv Life Sci. 2013;5(1&2):1-10. [FREE Full text]109]. Patients also raised basic accessibility issues such as font size and colors [Eyasu T, Leung K, Strudwick G. Guiding improvements in user experience: results of a mental health patient portal user interface assessment. Stud Health Technol Inform. 2019;257:110-114. [Medline]89,Forchuk C, Reiss JP, O'Regan T, Ethridge P, Donelle L, Rudnick A. Client perceptions of the mental health engagement network: a qualitative analysis of an electronic personal health record. BMC Psychiatry. Oct 14, 2015;15:250. [FREE Full text] [CrossRef] [Medline]98,Ennis L, Robotham D, Denis M, Pandit N, Newton D, Rose D, et al. Collaborative development of an electronic Personal Health Record for people with severe and enduring mental health problems. BMC Psychiatry. Nov 18, 2014;14:305. [FREE Full text] [CrossRef] [Medline]107] and navigation issues, including the number of links that patients had to navigate [Matthews EB, Savoy M, Paranjape A, Washington D, Hackney T, Galis D, et al. Acceptability of health information exchange and patient portal use in depression care among underrepresented patients. J Gen Intern Med. Nov 2022;37(15):3947-3955. [FREE Full text] [CrossRef] [Medline]79,Ennis L, Robotham D, Denis M, Pandit N, Newton D, Rose D, et al. Collaborative development of an electronic Personal Health Record for people with severe and enduring mental health problems. BMC Psychiatry. Nov 18, 2014;14:305. [FREE Full text] [CrossRef] [Medline]107]. For example, in the study by van den Heuvel [van den Heuvel SC, Meije D, Regeer EJ, Sinnema H, Riemersma RF, Kupka RW. The user experiences and clinical outcomes of an online personal health record to support self-management of bipolar disorder: a pretest-posttest pilot study. J Affect Disord. Oct 01, 2018;238:261-268. [CrossRef] [Medline]91], patients who had dropped out of using an ePHR cited issues with the user friendliness as the main reason, along with the ePHR requiring too much work and effort. HCPs may need to support patients in navigating and understanding their PAEHRs, particularly patients with low health literacy or digital literacy, cognitive issues, and memory issues [Schwarz J, Meier-Diedrich E, Neumann K, Heinze M, Eisenmann Y, Thoma S. Reasons for acceptance or rejection of online record access among patients affected by a severe mental illness: mixed methods study. JMIR Ment Health. Feb 05, 2024;11:e51126. [FREE Full text] [CrossRef] [Medline]68,Blease C, Torous J, Kharko A, DesRoches CM, Harcourt K, O'Neill S, et al. Preparing patients and clinicians for open notes in mental health: qualitative inquiry of international experts. JMIR Ment Health. Apr 16, 2021;8(4):e27397. [FREE Full text] [CrossRef] [Medline]71,Ennis L, Robotham D, Denis M, Pandit N, Newton D, Rose D, et al. Collaborative development of an electronic Personal Health Record for people with severe and enduring mental health problems. BMC Psychiatry. Nov 18, 2014;14:305. [FREE Full text] [CrossRef] [Medline]107,Hilton JF, Barkoff L, Chang O, Halperin L, Ratanawongsa N, Sarkar U, et al. A cross-sectional study of barriers to personal health record use among patients attending a safety-net clinic. PLoS One. 2012;7(2):e31888. [FREE Full text] [CrossRef] [Medline]108]. For HCPs to support patients, they need to be aware of what patients see in the record and how it functions for patients [van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58]. A lack of technology skills could be a barrier to patients engaging with their PAEHR [Onyeaka H, Ajayi KV, Muoghalu C, Eseaton PO, Azuike CO, Anugwom G, et al. Access to online patient portals among individuals with depression and anxiety. Psychiatry Res Commun. Dec 2022;2(4):100073. [FREE Full text] [CrossRef]12,Schwarz J, Meier-Diedrich E, Neumann K, Heinze M, Eisenmann Y, Thoma S. Reasons for acceptance or rejection of online record access among patients affected by a severe mental illness: mixed methods study. JMIR Ment Health. Feb 05, 2024;11:e51126. [FREE Full text] [CrossRef] [Medline]68], while some patients may also lack access to technology or the internet needed to use their PAEHR [Onyeaka H, Ajayi KV, Muoghalu C, Eseaton PO, Azuike CO, Anugwom G, et al. Access to online patient portals among individuals with depression and anxiety. Psychiatry Res Commun. Dec 2022;2(4):100073. [FREE Full text] [CrossRef]12]. There is a risk that the benefits of PAEHRs may primarily benefit patients who are literate, educated, and affluent [Strudwick G, Clark C, Sanches M, Strauss J. Predictors of mental health professionals' perceptions of patient portals. AMIA Annu Symp Proc. 2018;2018:989-997. [FREE Full text] [Medline]10].

Theme 7: PAEHRs Raise New Concerns About Information Privacy and Security for HCPs, Patients, and Third Parties
Overview

Both patients and HCPs shared general concerns about privacy and security threats introduced by the PAEHR [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Chimowitz H, O'Neill S, Leveille S, Welch K, Walker J. Sharing psychotherapy notes with patients: therapists' attitudes and experiences. Soc Work. Apr 01, 2020;65(2):159-168. [CrossRef] [Medline]52,Erlingsdóttir G, Petersson L, Jonnergård K. A theoretical twist on the transparency of open notes: qualitative analysis of health care professionals' free-text answers. J Med Internet Res. Sep 25, 2019;21(9):e14347. [FREE Full text] [CrossRef] [Medline]57,Turvey CL, Fuhrmeister LA, Klein DM, Moeckli J, Howren MB, Chasco EE. Patient and provider experience of electronic patient portals and secure messaging in mental health treatment. Telemed J E Health. Feb 2022;28(2):189-198. [FREE Full text] [CrossRef] [Medline]62,Schwarz J, Meier-Diedrich E, Neumann K, Heinze M, Eisenmann Y, Thoma S. Reasons for acceptance or rejection of online record access among patients affected by a severe mental illness: mixed methods study. JMIR Ment Health. Feb 05, 2024;11:e51126. [FREE Full text] [CrossRef] [Medline]68,Peck P, Torous J, Shanahan M, Fossa A, Greenberg W. Patient access to electronic psychiatric records: a pilot study. Health Policy Technol. Sep 2017;6(3):309-315. [CrossRef]76,Leung K, Clark C, Sakal M, Friesen M, Strudwick G. Patient and family member readiness, needs, and perceptions of a mental health patient portal: a mixed methods study. Stud Health Technol Inform. 2019;257:266-270. [Medline]104,Ennis L, Robotham D, Denis M, Pandit N, Newton D, Rose D, et al. Collaborative development of an electronic Personal Health Record for people with severe and enduring mental health problems. BMC Psychiatry. Nov 18, 2014;14:305. [FREE Full text] [CrossRef] [Medline]107]. Some of these concerns were related more broadly to EHRs that multiple HCPs could access rather than the PAEHR itself [Chimowitz H, O'Neill S, Leveille S, Welch K, Walker J. Sharing psychotherapy notes with patients: therapists' attitudes and experiences. Soc Work. Apr 01, 2020;65(2):159-168. [CrossRef] [Medline]52,Peck P, Torous J, Shanahan M, Fossa A, Greenberg W. Patient access to electronic psychiatric records: a pilot study. Health Policy Technol. Sep 2017;6(3):309-315. [CrossRef]76]. For example, some patients in the studies by O’Neill et al [O'Neill S, Blease C, Delbanco T. Open notes become law: a challenge for mental health practice. Psychiatr Serv. Jul 01, 2021;72(7):750-751. [CrossRef] [Medline]13] and Peck et al [Peck P, Torous J, Shanahan M, Fossa A, Greenberg W. Patient access to electronic psychiatric records: a pilot study. Health Policy Technol. Sep 2017;6(3):309-315. [CrossRef]76] raised concerns about their health record being available to other HCPs without their explicit consent. General concerns were also expressed about data hacking and breaches, but no participants reported experiences of these issues [Strudwick G, Clark C, Sanches M, Strauss J. Predictors of mental health professionals' perceptions of patient portals. AMIA Annu Symp Proc. 2018;2018:989-997. [FREE Full text] [Medline]10,Turvey CL, Fuhrmeister LA, Klein DM, Moeckli J, Howren MB, Chasco EE. Patient and provider experience of electronic patient portals and secure messaging in mental health treatment. Telemed J E Health. Feb 2022;28(2):189-198. [FREE Full text] [CrossRef] [Medline]62,Schwarz J, Meier-Diedrich E, Neumann K, Heinze M, Eisenmann Y, Thoma S. Reasons for acceptance or rejection of online record access among patients affected by a severe mental illness: mixed methods study. JMIR Ment Health. Feb 05, 2024;11:e51126. [FREE Full text] [CrossRef] [Medline]68,Peck P, Torous J, Shanahan M, Fossa A, Greenberg W. Patient access to electronic psychiatric records: a pilot study. Health Policy Technol. Sep 2017;6(3):309-315. [CrossRef]76,Strudwick G, Booth RG, McLean D, Leung K, Rossetti S, McCann M, et al. Identifying indicators of meaningful patient portal use by psychiatric populations. Inform Health Soc Care. Oct 01, 2020;45(4):396-409. [CrossRef] [Medline]77,Matthews EB, Savoy M, Paranjape A, Washington D, Hackney T, Galis D, et al. Acceptability of health information exchange and patient portal use in depression care among underrepresented patients. J Gen Intern Med. Nov 2022;37(15):3947-3955. [FREE Full text] [CrossRef] [Medline]79,Leung K, Clark C, Sakal M, Friesen M, Strudwick G. Patient and family member readiness, needs, and perceptions of a mental health patient portal: a mixed methods study. Stud Health Technol Inform. 2019;257:266-270. [Medline]104,Ennis L, Robotham D, Denis M, Pandit N, Newton D, Rose D, et al. Collaborative development of an electronic Personal Health Record for people with severe and enduring mental health problems. BMC Psychiatry. Nov 18, 2014;14:305. [FREE Full text] [CrossRef] [Medline]107]. The most specific privacy threats identified were managing third-party data in the PAEHR and third-party access to the PAEHR, as outlined in the subsequent sections.

Subtheme 7.1: PAEHRs Pose Challenges to Managing Third-Party Data

An issue reported by HCPs was how to protect the privacy of third parties, such as family members, when documenting information they had provided in the health record information [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49]. For example, HCPs might gather information about a patient from their family, which, when recorded in the PAEHR, would become visible to the patient. This risk might lead to HCPs reporting less information from family members or carers in the health record, which, as 1 participant in the study by Erlingsdóttir et al [Erlingsdóttir G, Petersson L, Jonnergård K. A theoretical twist on the transparency of open notes: qualitative analysis of health care professionals' free-text answers. J Med Internet Res. Sep 25, 2019;21(9):e14347. [FREE Full text] [CrossRef] [Medline]57] said, will be a “big problem because it is important information that otherwise falls out of the system.” Another approach reported by participants in the study by Zanaboni et al [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49] was to deidentify information provided by third parties.

Subtheme 7.2: PAEHRs Pose Challenges to Managing Third-Party Access to Patient Information

Both HCPs and patients raised concerns that PAEHRs could lead to third parties, such as family members, inappropriately accessing a patient’s health record [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Erlingsdóttir G, Petersson L, Jonnergård K. A theoretical twist on the transparency of open notes: qualitative analysis of health care professionals' free-text answers. J Med Internet Res. Sep 25, 2019;21(9):e14347. [FREE Full text] [CrossRef] [Medline]57,Schwarz J, Meier-Diedrich E, Neumann K, Heinze M, Eisenmann Y, Thoma S. Reasons for acceptance or rejection of online record access among patients affected by a severe mental illness: mixed methods study. JMIR Ment Health. Feb 05, 2024;11:e51126. [FREE Full text] [CrossRef] [Medline]68,Blease C, Torous J, Kharko A, DesRoches CM, Harcourt K, O'Neill S, et al. Preparing patients and clinicians for open notes in mental health: qualitative inquiry of international experts. JMIR Ment Health. Apr 16, 2021;8(4):e27397. [FREE Full text] [CrossRef] [Medline]71]. Participants in the study by van Rijt et al [van Rijt AM, Hulter P, Weggelaar-Jansen AM, Ahaus K, Pluut B. Mental health care professionals' appraisal of patients' use of web-based access to their electronic health record: qualitative study. J Med Internet Res. Aug 27, 2021;23(8):e28045. [FREE Full text] [CrossRef] [Medline]58] outlined the risk that patients could be influenced to share copies of their records or login details with family members who they may not want to have access to this information. There was also the broader issue of whether HCPs should record information assuming that the patient might give a third-party access to their PAEHR. For example, 1 participant in the study by Denneson et al [Denneson LM, Cromer R, Williams HB, Pisciotta M, Dobscha SK. A qualitative analysis of how online access to mental health notes is changing clinician perceptions of power and the therapeutic relationship. J Med Internet Res. Jun 14, 2017;19(6):e208. [FREE Full text] [CrossRef] [Medline]53] stated the following:

...someone said, “I smoked meth for 40 years and my wife doesn’t know.” And I was like, gosh, do I put this in the note? Because I don’t know if he is going to give his wife access to his notes and then see something that was delivered in confidence...

Such concerns might prompt HCPs to deny access altogether to certain information in the PAEHR to manage the risk of third-party access [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49].

A few studies explored the potential benefits and issues with family members or carers being given access to PAEHRs [Kassam I, Shin HD, Durocher K, Lo B, Shen N, Mehta R, et al. "I think it's something that we should lean in to": the use of OpenNotes in Canadian psychiatric care contexts by clinicians. Digit Health. 2022;8:20552076221144106. [FREE Full text] [CrossRef] [Medline]54,Schwarz J, Meier-Diedrich E, Neumann K, Heinze M, Eisenmann Y, Thoma S. Reasons for acceptance or rejection of online record access among patients affected by a severe mental illness: mixed methods study. JMIR Ment Health. Feb 05, 2024;11:e51126. [FREE Full text] [CrossRef] [Medline]68,Strudwick G, Booth RG, McLean D, Leung K, Rossetti S, McCann M, et al. Identifying indicators of meaningful patient portal use by psychiatric populations. Inform Health Soc Care. Oct 01, 2020;45(4):396-409. [CrossRef] [Medline]77,van den Heuvel SC, Meije D, Regeer EJ, Sinnema H, Riemersma RF, Kupka RW. The user experiences and clinical outcomes of an online personal health record to support self-management of bipolar disorder: a pretest-posttest pilot study. J Affect Disord. Oct 01, 2018;238:261-268. [CrossRef] [Medline]91,Forchuk C, Reiss JP, O'Regan T, Ethridge P, Donelle L, Rudnick A. Client perceptions of the mental health engagement network: a qualitative analysis of an electronic personal health record. BMC Psychiatry. Oct 14, 2015;15:250. [FREE Full text] [CrossRef] [Medline]98,Leung K, Clark C, Sakal M, Friesen M, Strudwick G. Patient and family member readiness, needs, and perceptions of a mental health patient portal: a mixed methods study. Stud Health Technol Inform. 2019;257:266-270. [Medline]104]. One of the few studies that involved family and carers found that they thought it would be helpful to support the patient if they had access to the PAEHR [Leung K, Clark C, Sakal M, Friesen M, Strudwick G. Patient and family member readiness, needs, and perceptions of a mental health patient portal: a mixed methods study. Stud Health Technol Inform. 2019;257:266-270. [Medline]104]. Similarly, in the study by Leung et al [Strudwick G, Booth RG, McLean D, Leung K, Rossetti S, McCann M, et al. Identifying indicators of meaningful patient portal use by psychiatric populations. Inform Health Soc Care. Oct 01, 2020;45(4):396-409. [CrossRef] [Medline]77], some patients reported that family or carer access could also be beneficial if it helped their family members or carers to better understand their health issues. However, in the same study, 43.7% (~43/103) of patients were interested in family members having access. The study by Schwarz et al [Schwarz J, Meier-Diedrich E, Neumann K, Heinze M, Eisenmann Y, Thoma S. Reasons for acceptance or rejection of online record access among patients affected by a severe mental illness: mixed methods study. JMIR Ment Health. Feb 05, 2024;11:e51126. [FREE Full text] [CrossRef] [Medline]68] found that family access could enhance the exchange of information about the patient’s illness and help family members participate in the patient’s care. Van den Heuvel et al [van den Heuvel SC, Meije D, Regeer EJ, Sinnema H, Riemersma RF, Kupka RW. The user experiences and clinical outcomes of an online personal health record to support self-management of bipolar disorder: a pretest-posttest pilot study. J Affect Disord. Oct 01, 2018;238:261-268. [CrossRef] [Medline]91] reported that 23.1% (~9/39) of patients preferred informal caregivers to have access compared to 25.6% (10/39) finding it adverse. Similarly, Leung et al [Leung K, Clark C, Sakal M, Friesen M, Strudwick G. Patient and family member readiness, needs, and perceptions of a mental health patient portal: a mixed methods study. Stud Health Technol Inform. 2019;257:266-270. [Medline]104] found, in interviewing patients about a patient portal, that less than half of those interviewed were interested in family members having access to their records. There may also be scenarios where family members support the patient in using the PAEHR [Forchuk C, Donelle L, Ethridge P, Warner L. Client perceptions of the mental health engagement network: a secondary analysis of an intervention using smartphones and desktop devices for individuals experiencing mood or psychotic disorders in Canada. JMIR Ment Health. 2015;2(1):e1. [FREE Full text] [CrossRef] [Medline]110], which raises questions about how to ensure that the patient has the option to maintain privacy in those situations.


Principal Findings

This scoping review explored how PAEHRs implemented in mental health care contexts change the information practices of HCPs and patients. We found that HCPs change their documentation practices in the presence of a PAEHR, including reducing the level of detail they document. HCPs changed their information practices because they were concerned that the PAEHR would negatively impact the therapeutic relationship and patient safety, and there was a lack of guidelines as to how these risks should be managed. There were clear benefits for patients who could use the PAEHR to understand and manage their care. However, patients may struggle to use the PAEHR without support and consideration of its ease of use.

The findings of this review suggest that HCPs perceive that PAEHRs change the purpose of the health record by requiring them to write with consideration of the patient as an audience rather than solely a clinical audience. It is a long-running issue that in an increasingly connected health care system, while technical interoperability between EHRs may increase, information is not necessarily written for multiple audiences [Gray LC, Berg K, Fries BE, Henrard JC, Hirdes JP, Steel K, et al. Sharing clinical information across care settings: the birth of an integrated assessment system. BMC Health Serv Res. Apr 29, 2009;9(1):71. [FREE Full text] [CrossRef] [Medline]111]. The findings of this review suggest that digital health technologies that allow records created or updated by HCPs to be indiscriminately accessed by multiple types of users risk HCPs adopting information practices outside formal systems and processes, such as by creating separate records that are not officially recognized by the health service [Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen MA, Sørensen T, et al. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry. Jul 28, 2022;22(1):508. [FREE Full text] [CrossRef] [Medline]49,Salomon RM, Blackford JU, Rosenbloom ST, Seidel S, Clayton EW, Dilts DM, et al. Openness of patients' reporting with use of electronic records: psychiatric clinicians' views. J Am Med Inform Assoc. 2010;17(1):54-60. [FREE Full text] [CrossRef] [Medline]112]. Omitting information from a patient’s health record not only fragments the record but also poses a risk to future care if information is lost or unavailable when needed. Potential technical advances, such as natural language processing and generative artificial intelligence, may solve this issue by supporting HCPs in translating their notes for different audiences [Horak J, Novak A, Voumik LC. Healthcare generative artificial intelligence tools in medical diagnosis, treatment, and prognosis. Contemp Read Law Soc Justice. 2023;15(1):81-98. [CrossRef]113-Emerencia A, van der Krieke L, Petkov N, Aiello M. Assessing schizophrenia with an interoperable architecture. In: Proceedings of the First International Workshop on Managing Interoperability and Complexity in Health Systems. 2011. Presented at: MIXHS '11; October 28, 2011; Glasgow, UK. [CrossRef]115].

HCPs in the included studies were concerned that PAEHRs would negatively impact the therapeutic relationship. The concern for the therapeutic relationship is not surprising, given it is a strong predictor of outcomes in mental health care [Priebe S, Mccabe R. Therapeutic relationships in psychiatry: the basis of therapy or therapy in itself? Int Rev Psychiatry. Dec 2008;20(6):521-526. [CrossRef] [Medline]116]. HCPs and patients also thought that the PAEHR could strengthen the therapeutic relationship by contributing to transparency, communication, and trust. This finding aligns with evidence that mutual trust, demonstration of mutual respect, and shared decision-making were key components of a beneficial therapeutic relationship [Farrelly S, Lester H. Therapeutic relationships between mental health service users with psychotic disorders and their clinicians: a critical interpretive synthesis. Health Soc Care Community. Sep 2014;22(5):449-460. [CrossRef] [Medline]117]. This finding may also explain why HCPs and patients saw benefits in the PAEHR facilitating communication about disagreements, as it helps build mutual trust [Woltmann EM, Whitley R. Shared decision making in public mental health care: perspectives from consumers living with severe mental illness. Psychiatr Rehabil J. 2010;34(1):29-36. [CrossRef] [Medline]118]. However, both HCPs and patients expressed concerns that discussing what is documented in the PAEHR may add to workloads. A lack of time available for HCPs and patients to actively review and discuss the PAEHR may limit its use in strengthening the therapeutic relationship.

Risk to patient safety due to patients experiencing distress from reading their PAEHR was a key concern for both HCPs and patients. One of the key strategies used by HCPs to manage risk was to not document or limit the documentation of information that they perceived may be distressing for patients. This focus on risk is expected, given risk management has a prominent role in mental health care, as HCPs must consider and manage risks posed by patients to themselves or others [Felton A, Repper J, Avis M. Therapeutic relationships, risk, and mental health practice. Int J Ment Health Nurs. Jun 2018;27(3):1137-1148. [CrossRef] [Medline]119]. One way HCPs manage risk is by avoiding situations that may involve heightened risks [Felton A, Repper J, Avis M. Therapeutic relationships, risk, and mental health practice. Int J Ment Health Nurs. Jun 2018;27(3):1137-1148. [CrossRef] [Medline]119,Ahmed N, Barlow S, Reynolds L, Drey N, Begum F, Tuudah E, et al. Mental health professionals' perceived barriers and enablers to shared decision-making in risk assessment and risk management: a qualitative systematic review. BMC Psychiatry. Nov 25, 2021;21(1):594. [FREE Full text] [CrossRef] [Medline]120]. In this review, HCPs avoided risk by not documenting information they perceived could pose a risk to patients. This approach to avoiding risk may have been reinforced by a lack of guidelines for managing risk. HCPs are usually required to take a systematic approach to risk assessment, informed by organizational policies [Muir-Cochrane E, Gerace A, Mosel K, O'Kane D, Barkway P, Curren D, et al. Managing risk: clinical decision-making in mental health services. Issues Ment Health Nurs. 2011;32(12):726-734. [CrossRef] [Medline]121], which appeared to be lacking in relation to PAEHR adoption in the included studies. Evidence also suggests that there is value in involving patients in identifying and managing risks [Deering K, Pawson C, Summers N, Williams J. Patient perspectives of helpful risk management practices within mental health services. A mixed studies systematic review of primary research. J Psychiatr Ment Health Nurs. Jun 2019;26(5-6):185-197. [CrossRef] [Medline]122]. However, patient involvement in HCPs’ decisions to limit the documentation of information in the PAEHR appeared to be limited.

Patients wanted a greater breadth of information documented in their PAEHR, including strength-based and recovery-focused information. In contrast, HCPs managed the perceived risks of PAEHRs by reducing the depth of information they documented. These findings align with the growing literature on person-centered documentation, which seeks to consider the role patients can play in information documentation practices. Lyadhl et al [Lydahl D, Britten N, Wolf A, Naldemirci Ö, Lloyd H, Heckemann B. Exploring documentation in person-centred care: a content analysis of care plans. Int J Older People Nurs. Sep 2022;17(5):e12461. [FREE Full text] [CrossRef] [Medline]123] reflects that health record documentation practices are embedded in a biomedical model of care that prioritizes certain types of information to support communication between HCPs, rather than communication with patients. Person-centered documentation requires consideration of the patient’s goals, needs, resources, and narrative. “Collaborative documentation” is a model that supports HCPs and patients in working together to determine what should be documented during the clinical encounter [Stanhope V, Ingoglia C, Schmelter B, Marcus SC. Impact of person-centered planning and collaborative documentation on treatment adherence. Psychiatr Serv. Jan 2013;64(1):76-79. [CrossRef] [Medline]124,Maniss S, Pruit A. Collaborative documentation for behavioral healthcare providers: an emerging practice. J Human Serv Train Res Pract. 2018;3(1). [FREE Full text]125]. It is a form of shared decision-making that seeks to improve the transparency of what is documented in the patient’s EHR [Stanhope V, Ingoglia C, Schmelter B, Marcus SC. Impact of person-centered planning and collaborative documentation on treatment adherence. Psychiatr Serv. Jan 2013;64(1):76-79. [CrossRef] [Medline]124]. Adopting a model such as collaborative documentation may address some of the concerns that PAEHRs will lead to disagreements about what is documented in the PAEHR.

PAEHRs can support new patient information practices, but there are barriers to patients using their PAEHR. PAEHR use by patients was low in the included studies, which is concerning given that recent studies in other health care settings have found generally high use rates [Liu SK, Osborn AE, Bell S, Mecchella JN, Hort S, Batsis JA. Patient characteristics and utilization of an online patient portal in a rural academic general internal medicine practice. BMC Med Inform Decis Mak. Feb 16, 2022;22(1):42. [FREE Full text] [CrossRef] [Medline]126,El Yaman N, Zeitoun J, Diab R, Mdaihly M, Diab R, Kobeissi L, et al. Utilization of patient portals: a cross-sectional study investigating associations with mobile app quality. BMC Med Inform Decis Mak. Sep 05, 2023;23(1):177. [FREE Full text] [CrossRef] [Medline]127]. The lower rates of PAEHR use in mental health care contexts may be partly explained by the slower adoption of PAEHRs in mental health care contexts, as the use of PAEHRs tends to increases over time [Onyeaka H, Ajayi KV, Muoghalu C, Eseaton PO, Azuike CO, Anugwom G, et al. Access to online patient portals among individuals with depression and anxiety. Psychiatry Res Commun. Dec 2022;2(4):100073. [FREE Full text] [CrossRef]12,Hong YA, Jiang S, Liu PL. Use of patient portals of electronic health records remains low from 2014 to 2018: results from a national survey and policy implications. Am J Health Promot. Jul 2020;34(6):677-680. [CrossRef] [Medline]128]. It is also worth noting that many of the studies that considered use rates were conducted before the COVID-19 pandemic. The pandemic may have accelerated the adoption and use of PAEHRs due to the limits on in-person contact and the rapid adoption of telehealth [Singh S, Polavarapu M, Arsene C. Changes in patient portal adoption due to the emergence of COVID-19 pandemic. Inform Health Soc Care. Apr 03, 2023;48(2):125-138. [CrossRef] [Medline]129].

Patient uptake of PAEHRs also relies on endorsement from HCPs [Irizarry T, DeVito Dabbs A, Curran CR. Patient portals and patient engagement: a state of the science review. J Med Internet Res. Jun 23, 2015;17(6):e148. [FREE Full text] [CrossRef] [Medline]130]. However, our findings suggest that the lack of guidance for HCPs paired with the perceived risks to the therapeutic relationship and patient safety may act as a barrier to HCPs actively engaging patients in using their PAEHR. It was also identified that HCPs may not proactively engage certain groups of patients whom they perceive as at greater risk of negative outcomes from using their PAEHR. This finding may partly explain why, in some studies, patients with certain diagnoses were less likely to use their PAEHR. There is value in considering which patients may experience a negative response to a accessing their PAEHR, noting that some patients in the included studies did have negative experiences. Patient readiness measures, which have been found to be valid in measuring the likelihood of patients using health information technology [Koopman RJ, Mehr DR, Petroski G, Campbell JD, Erdelez S, Headrick L. Patient readiness to use internet health resources. The Agency for Healthcare Research and Quality. 2014. URL: https:/​/digital.​ahrq.gov/​sites/​default/​files/​docs/​publication/​k08hs017948-koopman-final-report-2014.​pdf [accessed 2023-10-29] 131,Koopman RJ, Petroski GF, Canfield SM, Stuppy JA, Mehr DR. Development of the PRE-HIT instrument: patient readiness to engage in health information technology. BMC Fam Pract. Jan 28, 2014;15:18. [FREE Full text] [CrossRef] [Medline]132], could form part of guidelines for HCPs to identify patients who need further support to use their PAEHR.

The time and resource pressures on HCPs are well documented, as are the impacts of these pressures on HCPs’ ability to engage with new digital health technologies [Tsai CH, Eghdam A, Davoody N, Wright G, Flowerday S, Koch S. Effects of electronic health record implementation and barriers to adoption and use: a scoping review and qualitative analysis of the content. Life (Basel). Dec 04, 2020;10(12):327. [FREE Full text] [CrossRef] [Medline]133,Ajami S, Bagheri-Tadi T. Barriers for adopting electronic health records (EHRs) by physicians. Acta Inform Med. 2013;21(2):129-134. [FREE Full text] [CrossRef] [Medline]134]. In some mental health care services, other professionals could support patients to use their PAEHR, if HCPs are not provided with the time and resources to do this role. For example, peer workers are increasingly involved in mental health care services [Gillard S, Holley J. Peer workers in mental health services: literature overview. Adv Psychiatr Treat. Jan 02, 2018;20(4):286-292. [CrossRef]135] and could play a role in supporting patients to use their PAEHR, as well as role-modeling how can be integrated into [Miller KE, Kuhn E, Yu J, Owen JE, Jaworski BK, Taylor K, et al. Use and perceptions of mobile apps for patients among VA primary care mental and behavioral health providers. Prof Psychol Res Pract. Jun 2019;50(3):204-209. [CrossRef]136]. Similarly, care workers or “health care navigators” who in some health care systems support patients to move between health care services [Waid J, Halpin K, Donaldson R. Mental health service navigation: a scoping review of programmatic features and research evidence. Soc Work Mental Health. Jan 11, 2021;19(1):60-79. [CrossRef]137] may be well positioned to support patients in using their PAEHR. However, in all these cases, consideration will need to be given to how confidentiality of patient information is managed.

Managing third-party access to the PAEHR, particularly coercive access, was a key issue for HCPs but was not raised as a key issue by patients. It may be that patients at risk of having third parties inappropriately access their records were not participants in the included studies. The few studies that asked patients about family access found that they were uncomfortable with family members having access to their PAEHR. The issue of third-party access could be addressed through initiatives such as dynamic consent, where patients are given real-time control over managing their data through a personalized digital interface [Kaye J, Whitley EA, Lund D, Morrison M, Teare H, Melham K. Dynamic consent: a patient interface for twenty-first century research networks. Eur J Hum Genet. Feb 2015;23(2):141-146. [FREE Full text] [CrossRef] [Medline]138]. Australia’s national PAEHR, My Health Record, presents another approach for patients to manage third-party access by allowing them to nominate a trusted person to access their record and determine the level of access available to them [Nominated representatives. Australian Digital Health Agency. URL: https:/​/www.​digitalhealth.gov.au/​initiatives-and-programs/​my-health-record/​manage-your-record/​privacy-and-access/​nominated-representatives [accessed 2023-10-29] 139]. Health care services could also provide kiosks for patients to access their PAEHR in the health care clinic if at-home access poses a risk of unauthorized third-party access. However, these approaches do not necessarily address the issue of third parties who may coerce patients into providing access to their PAEHR.

The findings of this review also raise questions as to how inequalities in patients’ resources and digital literacy may shape their interactions with a PAEHR. In the mental health care context, patients can experience socioeconomic disadvantages, which may limit their access to technology, meaning they may rely on smartphones or public computers [Druss BG, Ji X, Glick G, von Esenwein SA. Randomized trial of an electronic personal health record for patients with serious mental illnesses. Am J Psychiatry. Mar 2014;171(3):360-368. [CrossRef] [Medline]96,Ennis L, Robotham D, Denis M, Pandit N, Newton D, Rose D, et al. Collaborative development of an electronic Personal Health Record for people with severe and enduring mental health problems. BMC Psychiatry. Nov 18, 2014;14:305. [FREE Full text] [CrossRef] [Medline]107,Gay K, Torous J, Joseph A, Pandya A, Duckworth K. Digital technology use among individuals with schizophrenia: results of an online survey. JMIR Ment Health. May 04, 2016;3(2):e15. [FREE Full text] [CrossRef] [Medline]140]. PAEHRs should be designed to maintain privacy and accessibility, regardless of the location or type of device patients use to access them. There is a risk that the benefits of PAEHRs may disproportionately favor patients with more resources, rather than those facing the greatest health challenges [Richwine C, Johnson C, Patel V. Disparities in patient portal access and the role of providers in encouraging access and use. J Am Med Inform Assoc. Jan 18, 2023;30(2):308-317. [FREE Full text] [CrossRef] [Medline]141,Antonio MG, Petrovskaya O, Lau F. Is research on patient portals attuned to health equity? A scoping review. J Am Med Inform Assoc. Aug 01, 2019;26(8-9):871-883. [FREE Full text] [CrossRef] [Medline]142]. These issues pose a more serious question about what the health system expects of patients when a PAEHR is available. Wynia and Dunn [Wynia M, Dunn K. Dreams and nightmares: practical and ethical issues for patients and physicians using personal health records. J Law Med Ethics. 2010;38(1):64-73. [CrossRef] [Medline]143] outline 2 assumptions underlying PAEHRs: that more information for patients equals better decision-making and that patients should take greater responsibility for their health care. Lucivero [Lucivero F. Lessons about so-called "difficult" patients from the UK controversy over patient access to electronic health records. AMA J Ethics. Apr 01, 2017;19(4):374-380. [FREE Full text] [CrossRef] [Medline]144] posits that PAEHRs may enroll patients into providing free labor for the health system where they act as intermediaries between HCPs by using their PAEHR to fill gaps in information. However, this role may be undermined if HCPs do not support patients to use their PAEHR, such as if HCPs are unwilling to act on information patients share with them, or if patients do not have the resources to fulfill this role.

Comparison With Prior Work

The findings of this review align and extend the findings of recent reviews by Zhang et al [Zhang T, Shen N, Booth R, LaChance J, Jackson B, Strudwick G. Supporting the use of patient portals in mental health settings: a scoping review. Inform Health Soc Care. Jan 02, 2022;47(1):62-79. [CrossRef] [Medline]24] and Schwarz et al [Schwarz J, Bärkås A, Blease C, Collins L, Hägglund M, Markham S, et al. Sharing clinical notes and electronic health records with people affected by mental health conditions: scoping review. JMIR Ment Health. Dec 14, 2021;8(12):e34170. [FREE Full text] [CrossRef] [Medline]9] in mental health care contexts. Some of the factors for successful implementation of patient portals identified by Zhang et al [Zhang T, Shen N, Booth R, LaChance J, Jackson B, Strudwick G. Supporting the use of patient portals in mental health settings: a scoping review. Inform Health Soc Care. Jan 02, 2022;47(1):62-79. [CrossRef] [Medline]24], such as training and resourcing, are also issues that we identified as contributing to some of the changes to HCPs’ information practices. Similar to the findings of Schwarz et al [Schwarz J, Bärkås A, Blease C, Collins L, Hägglund M, Markham S, et al. Sharing clinical notes and electronic health records with people affected by mental health conditions: scoping review. JMIR Ment Health. Dec 14, 2021;8(12):e34170. [FREE Full text] [CrossRef] [Medline]9], we found that HCPs were more likely to express concerns about PAEHRs compared to patients. Our study extends the research into PAEHRs in mental health care contexts by framing the perceived risks of PAEHRs to the therapeutic relationship and patient safety as key factors in HCPs changing their information practice, further fueled by a lack of guidance and training. Several recent reviews of PAEHRs in other health care contexts also support the findings of this study. In a systematic review, Tapuria et al [Tapuria A, Porat T, Kalra D, Dsouza G, Xiaohui S, Curcin V. Impact of patient access to their electronic health record: systematic review. Inform Health Soc Care. Jun 02, 2021;46(2):192-204. [CrossRef] [Medline]31] found that patient portals had a range of benefits, such as reassuring patients and reducing anxiety, improving the physician-patient relationship, and improving patient outcomes. However, they also identified concerns regarding security, privacy and confidentiality, and patients experiencing anxiety with access to their records. In a recent systematic review of facilitators and barriers to electronic portal use, Powell [Powell KR. Patient-perceived facilitators of and barriers to electronic portal use: a systematic review. Comput Inform Nurs. Nov 2017;35(11):565-573. [CrossRef] [Medline]145] found that HCP encouragement is a key factor in both the initial and continued use of the PAEHR by patients. The findings of our review suggest that PAEHRs in mental health care contexts raise similar issues to their use in other health care contexts. However, we also found that that in mental health care contexts, HCPs still harbor significant concerns about how to protect the therapeutic relationship and patient safety—2 issues that have distinctive implications in the mental health care context.

What Do the Findings Mean for Future Research?

Future research should consider how changes to HCP and patient information practices after the adoption of a PAEHR impacts clinical and patient experience outcomes. This study found that the use of PAEHRs led to changes in what is documented in the EHR and a potential “watering down” of information. Future research should explore the impact of these changes on collaborative care and clinical outcomes in the presence of a PAEHR. If these changes to information practices significantly impact the ability of other HCPs to provide appropriate care, it will strengthen the case for increased training, support, and guidance for how HCPs should document information in the presence of a PAEHR. It would also be valuable for more studies to explore the implementation and use of PAEHRs in practice and how HCP and patient use change over time, particularly given that use of PAEHRs tends to increase over time. There are very few studies that involved HCPs and patients in the process of designing a PAEHR. Given the findings of this review, there is a clear need for more studies that actively involve HCPs and patients in decisions about how PAEHRs are designed and implemented.

Limitations

This review is limited in part due to the heterogeneity of the field, particularly the lack of common definitions of PAEHRs, which means that there may be studies that were missed in the search strategy. Furthermore, our search strategy did not include gray literature, meaning evaluations of some PAEHR systems that have not been published in academic journals may have been missed. This review was also limited by having only 1 author screen all the studies and extract the data for analysis. A pragmatic approach to screening was used, where only studies with unclear eligibility for inclusion were screened by a second author.

Conclusions

This scoping review explored the impact of PAEHRs on information practices in mental health contexts. HCPs reported making various changes to their documentation practices to minimize the risk of PAEHRs harming the therapeutic relationship and patient safety. However, PAEHRs could also promote communication between HCPs and patients about what was being documented. PAEHRs also introduced new information practices for patients that allowed them to manage their health better and engage with health care services. PAEHRs are still considerably new in mental health care contexts, and patient adoption and use of established PAEHRs remain relatively low. Research is required on the impact of documentation changes on clinical outcomes and patient experience as well as approaches to improve adoption and use rates of PAEHRs. The findings of this study point to a lack of guidelines and support for HCPs and patients in the implementation of PAEHRs.

Acknowledgments

TK was supported by an Australian Government Research Training Program stipend and Research Training Program Fee-Offset Scholarship through the University of Melbourne.

Generative artificial intelligence was not used in the research, preparation, writing, or editing of this manuscript.

Authors' Contributions

TCK was involved in conceptualization, writing the original draft, and investigation. MP, KG and SC were involved in reviewing and editing the draft and study supervision.

Conflicts of Interest

None declared.

Multimedia Appendix 1

PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist.

DOCX File , 109 KB

Multimedia Appendix 2

Details of the included studies.

DOCX File , 37 KB

Multimedia Appendix 3

Illustrative quotes.

DOCX File , 24 KB

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EHR: electronic health record
ePHR: electronic personal health record
HCP: health care professional
PAEHR: patient-accessible electronic health record
pEHR: personal electronic health record
PRISMA-ScR: Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews


Edited by T de Azevedo Cardoso; submitted 29.11.23; peer-reviewed by GD Karampatakis, MJ Tan; comments to author 08.02.24; revised version received 09.04.24; accepted 25.11.24; published 07.02.25.

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©Timothy Kariotis, Megan Prictor, Kathleen Gray, Shanton Chang. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 07.02.2025.

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