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Patients’ Access to Their Mental Health Records: Understanding Policy, Access, and Patient Experiences
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Participatory eHealth and Health Data Research Group.ORCID iD: 0000-0002-1209-7714
2024 (English)Doctoral thesis, comprehensive summary (Other academic)
Description
Abstract [en]

ORA is the concept of patients' access to clinical information, which has become more widespread worldwide. When patients are provided online record access (ORA) to their health records, concerns have been raised by healthcare professionals, especially when it comes to patients with mental health diagnoses. In the general population, positive aspects appear to outweigh the negative, yet limited research has so far explored the impact of ORA in mental healthcare. 

The overall aim of this thesis was to explore how patients experience ORA in mental healthcare through four studies: 1) a literature review aimed to explore the current literature on the experiences of ORA among mental healthcare patients, care partners, and healthcare professionals, 2) a document analysis combined with key stakeholder email interviews that aimed to explore to what extent ORA in mental healthcare has been implemented in Sweden including national and local policy regulations, 3) an online patient survey study aimed to understand mental healthcare patients' experiences with ORA in Sweden, Estonia, Finland, and Norway, and 4) an online patient survey study aimed to understand if and how patients with mental health conditions experiences of ORA differs from patients in other healthcare settings. 

More patients reported positive experiences with ORA in mental healthcare than negative experiences. Common benefits of ORA included, among others, a greater sense of control over their care, improved understanding of their mental health diagnosis, and better adherence to appointments. Despite patients' predominant positive experiences, only 17 out of 21 regions in Sweden offered ORA in mental healthcare in 2021. Additionally, many patients experienced errors and omissions and felt offended by the content of their health records. Mental healthcare patients experienced this at a higher rate than patients in other healthcare settings.

In conclusion, mental healthcare patients have higher rates of negative experiences of ORA compared to patients in other healthcare settings. However, patients' experiences of ORA are still predominantly positive among both patient groups. Yet, in 2021, only 17 regions offered patients ORA in mental healthcare. Denying mental healthcare patients ORA to protect them from negative experiences could instead increase stigma in this patient group.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2024. , p. 65
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 2018
Keywords [en]
Mental health, Psychiatry, Online Record Access, Patient-Accessible Electronic Health Records, Open notes, Patient experiences
National Category
Other Health Sciences
Research subject
Medical Informatics
Identifiers
URN: urn:nbn:se:uu:diva-522720ISBN: 978-91-513-2040-3 (print)OAI: oai:DiVA.org:uu-522720DiVA, id: diva2:1839457
Public defence
2024-04-10, Sal IX, Universitetshuset, Biskopsgatan 3, Uppsala, 09:15 (English)
Opponent
Supervisors
Projects
NORDeHEALTHAvailable from: 2024-03-15 Created: 2024-02-20 Last updated: 2024-03-15
List of papers
1. Sharing Clinical Notes and Electronic Health Records With People Affected by Mental Health Conditions: Scoping Review
Open this publication in new window or tab >>Sharing Clinical Notes and Electronic Health Records With People Affected by Mental Health Conditions: Scoping Review
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2021 (English)In: JMIR Mental Health, E-ISSN 2368-7959, Vol. 8, no 12, article id e34170Article in journal (Refereed) Published
Abstract [en]

Background: Electronic health records (EHRs) are increasingly implemented internationally, whereas digital sharing of EHRs with service users (SUs) is a relatively new practice. Studies of patient-accessible EHRs (PAEHRs)-often referred to as open notes-have revealed promising results within general medicine settings. However, studies carried out in mental health care (MHC) settings highlight several ethical and practical challenges that require further exploration.

Objective: This scoping review aims to map available evidence on PAEHRs in MHC. We seek to relate findings with research from other health contexts, to compare different stakeholders' perspectives, expectations, actual experiences with PAEHRs, and identify potential research gaps.

Methods: A systematic scoping review was performed using 6 electronic databases. Studies that focused on the digital sharing of clinical notes or EHRs with people affected by mental health conditions up to September 2021 were included. The Mixed Methods Appraisal Tool was used to assess the quality of the studies. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Extension for Scoping Reviews guided narrative synthesis and reporting of findings.

Results: Of the 1034 papers screened, 31 were included in this review. The studies used mostly qualitative methods or surveys and were predominantly published after 2018 in the United States. PAEHRs were examined in outpatient (n=29) and inpatient settings (n=11), and a third of all research was conducted in Veterans Affairs Mental Health. Narrative synthesis allowed the integration of findings according to the different stakeholders. First, SUs reported mainly positive experiences with PAEHRs, such as increased trust in their clinician, health literacy, and empowerment. Negative experiences were related to inaccurate notes, disrespectful language use, or uncovering of undiscussed diagnoses. Second, for health care professionals, concerns outweigh the benefits of sharing EHRs, including an increased clinical burden owing to more documentation efforts and possible harm triggered by reading the notes. Third, care partners gained a better understanding of their family members' mental problems and were able to better support them when they had access to their EHR. Finally, policy stakeholders and experts addressed ethical challenges and recommended the development of guidelines and trainings to better prepare both clinicians and SUs on how to write and read notes.

Conclusions: PAEHRs in MHC may strengthen user involvement, patients' autonomy, and shift medical treatment to a coproduced process. Acceptance issues among health care professionals align with the findings from general health settings. However, the corpus of evidence on digital sharing of EHRs with people affected by mental health conditions is limited. Above all, further research is needed to examine the clinical effectiveness, efficiency, and implementation of this sociotechnical intervention.

Place, publisher, year, edition, pages
JMIR Publications, 2021
Keywords
electronic health records, open notes, psychiatry, mental health, user involvement, patient advocacy, patient portal
National Category
Psychiatry Other Medical Sciences not elsewhere specified
Research subject
Medical Informatics; Psychology
Identifiers
urn:nbn:se:uu:diva-462043 (URN)10.2196/34170 (DOI)000739100300011 ()34904956 (PubMedID)
Projects
NORDeHEALTHBeyond Implementation of eHealth
Funder
NordForsk, 100477Forte, Swedish Research Council for Health, Working Life and Welfare, 2020-01229
Available from: 2021-12-19 Created: 2021-12-19 Last updated: 2024-02-20Bibliographically approved
2. Patients’ Access to Their Psychiatric Notes: Current Policies and Practices in Sweden
Open this publication in new window or tab >>Patients’ Access to Their Psychiatric Notes: Current Policies and Practices in Sweden
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2021 (English)In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 18, no 17, article id 9140Article in journal (Refereed) Published
Abstract [en]

Patients’ access to electronic health records (EHRs) is debated worldwide, and access to psychiatry records is even more criticized. There is a nationwide service in Sweden which offers all citizens the opportunity to read their EHR, including clinical notes. This study aims to explore Swedish national and local policy regulations regarding patients’ access to their psychiatric notes and describe to what extent patients currently are offered access to them. The rationale behind the study is that current policies and current practices may differ between the 21 self-governing regions, although there is a national regulation. We gathered web-based information from policy documents and regulations from each region’s website. We also conducted key stakeholder interviews with respondents from the regions and cross-regional private care providers, using a qualitative approach. The results show that 17 of 21 regions share psychiatric notes with patients, where forensic psychiatric care was the most excluded psychiatric care setting. All private care providers reported that they mainly follow the regions’ guidelines. Our findings show that regional differences concerning sharing psychiatric notes persist, despite Swedish regulations and a national policy that stipulates equal care for everyone. The differences, however, appear to have decreased over time, and we report evidence that the regions are moving toward increased transparency for psychiatry patients.

Place, publisher, year, edition, pages
MDPI, 2021
Keywords
mental health, psychiatry, psychiatric record, psychiatric notes, patient accessible electronic health record, PAEHR, open notes, policies
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Research subject
Medical Informatics
Identifiers
urn:nbn:se:uu:diva-452386 (URN)10.3390/ijerph18179140 (DOI)000694051800001 ()34501730 (PubMedID)
Projects
NORDeHEALTH
Funder
NordForsk, 100477
Available from: 2021-09-06 Created: 2021-09-06 Last updated: 2024-02-20Bibliographically approved
3. Experiences from Patients in Mental Healthcare Accessing their Electronic Health Records: Results from a Cross-National Survey in Estonia, Finland, Norway, and Sweden
Open this publication in new window or tab >>Experiences from Patients in Mental Healthcare Accessing their Electronic Health Records: Results from a Cross-National Survey in Estonia, Finland, Norway, and Sweden
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(English)Manuscript (preprint) (Other academic)
National Category
Other Health Sciences
Research subject
Medical Informatics
Identifiers
urn:nbn:se:uu:diva-522716 (URN)
Available from: 2024-02-08 Created: 2024-02-08 Last updated: 2024-02-20
4. Errors, Omissions, and Offenses in the Health Record of Mental Health Care Patients: Results from a Nationwide Survey in Sweden
Open this publication in new window or tab >>Errors, Omissions, and Offenses in the Health Record of Mental Health Care Patients: Results from a Nationwide Survey in Sweden
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2023 (English)In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25, article id e47841Article in journal (Refereed) Published
Abstract [en]

Background: Previous research reports that patients with mental health conditions experience benefits, for example, increased empowerment and validation, from reading their patient-accessible electronic health records (PAEHRs). In mental health care (MHC), PAEHRs remain controversial, as health care professionals are concerned that patients may feel worried or offended by the content of the notes. Moreover, existing research has focused on specific mental health diagnoses, excluding the larger PAEHR userbase with experience in MHC. Objective: The objective of this study is to establish if and how the experiences of patients with and those without MHC differ in using their PAEHRs by (1) comparing patient characteristics and differences in using the national patient portal between the 2 groups and (2) establishing group differences in the prevalence of negative experiences, for example, rates of errors, omissions, and offenses between the 2 groups. Methods: Our analysis was performed on data from an online patient survey distributed through the Swedish national patient portal as part of our international research project, NORDeHEALTH. The respondents were patient users of the national patient portal 1177, aged 15 years or older, and categorized either as those with MHC experience or with any other health care experience (nonmental health care [non-MHC]). Patient characteristics such as gender, age, education, employment, and health status were gathered. Portal use characteristics included frequency of access, encouragement to read the record, and instances of positive and negative experiences. Negative experiences were further explored through rates of error, omission, and offense. The data were summarized through descriptive statistics. Group differences were analyzed through Pearson chi-square. Results: Of the total sample (N=12,334), MHC respondents (n=3131) experienced errors (1586/3131, 50.65%, and non-MHC 3311/9203, 35.98%), omissions (1089/3131, 34.78%, and non-MHC 2427/9203, 26.37%) and offenses (1183/3131, 37.78%, and non-MHC 1616/9203, 17.56%) in the electronic health record at a higher rate than non-MHC respondents (n=9203). Respondents reported that the identified error (MHC 795/3131, 50.13%, and non-MHC 1366/9203, 41.26%) and omission (MHC 622/3131, 57.12%, and non-MHC 1329/9203, 54.76%) were “very important,” but most did nothing to correct them (MHC 792/3131, 41.29%, and non-MHC 1838/9203, 42.17%). Most of the respondents identified as women in both groups. Conclusions: About 1 in 2 MHC patients identified an error in the record, and about 1 in 3 identified an omission, both at a much higher rate than in the non-MHC group. Patients with MHC also felt offended by the content of the notes more commonly (1 in 3 vs 1 in 6). These findings validate some of the worries expressed by health care professionals about providing patients with MHC with PAEHRs and highlight challenges with the documentation quality in the records.

Keywords
electronic health records, EHR, mental health, mental health care, national survey, online records access, open notes, ORA, patient-accessible electronic health record, PAEHR, patients, user experiences
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Research subject
Medical Informatics
Identifiers
urn:nbn:se:uu:diva-515506 (URN)10.2196/47841 (DOI)
Funder
NordForsk, 100477Forte, Swedish Research Council for Health, Working Life and Welfare
Available from: 2023-11-03 Created: 2023-11-03 Last updated: 2024-03-27Bibliographically approved

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