Reasons for Acceptance or Rejection of Online Record Access Among Patients Affected by a Severe Mental Illness: Mixed Methods Study.

BACKGROUND: Over the past few years, online record access (ORA) has been established through secure patient portals in various countries, allowing patients to access their health data, including clinical notes ("open notes"). Previous research indicates that ORA in mental health, particularly among patients with severe mental illness (SMI), has been rarely offered. Little is known about the expectations and motivations of patients with SMI when reading what their clinicians share via ORA. OBJECTIVE: The aim of this study is to explore the reasons why patients with SMI consider or reject ORA and whether sociodemographic characteristics may influence patient decisions. METHODS: ORA was offered to randomly selected patients at 3 university outpatient clinics in Brandenburg, Germany, which exclusively treat patients with SMI. Within the framework of a mixed methods evaluation, qualitative interviews were conducted with patients who chose to participate in ORA and those who declined, aiming to explore the underlying reasons for their decisions. The interviews were transcribed and analyzed using thematic analysis. Sociodemographic characteristics of patients were examined using descriptive statistics to identify predictors of acceptance or rejection of ORA. RESULTS: Out of 103 included patients, 58% (n=60) wished to read their clinical notes. The reasons varied, ranging from a desire to engage more actively in their treatment to critically monitoring it and using the accessible data for third-party purposes. Conversely, 42% (n=43) chose not to use ORA, voicing concerns about possibly harming the trustful relationship with their clinicians as well as potential personal distress or uncertainty arising from reading the notes. Practical barriers such as a lack of digital literacy or suspected difficult-to-understand medical language were also named as contributing factors. Correlation analysis revealed that the majority of patients with depressive disorder desired to read the clinical notes (P<.001), while individuals with psychotic disorders showed a higher tendency to decline ORA (P<.05). No significant group differences were observed for other patient groups or characteristics. CONCLUSIONS: The adoption of ORA is influenced by a wide range of motivational factors, while patients also present a similar variety of reasons for declining its use. The results emphasize the urgent need for knowledge and patient education regarding factors that may hinder the decision to use ORA, including its practical usage, its application possibilities, and concerns related to data privacy. Further research is needed to explore approaches for adequately preparing individuals with SMI to transition from their inherent interest to active engagement with ORA. TRIAL REGISTRATION: German Clinical Trial Register DRKS00030188; https://drks.de/search/en/trial/DRKS00030188.

Changes in Documentation Due to Patient Access to Electronic Health Records: Protocol for a Scoping Review.

BACKGROUND: Internationally, patient-accessible electronic health records (PAEHRs) are increasingly being implemented. Despite reported benefits to patients, the innovation has prompted concerns among health care professionals (HCPs), including the possibility that access incurs a "dumbing down" of clinical records. Currently, no review has investigated empirical evidence of whether and how documentation changes after introducing PAEHRs. OBJECTIVE: This paper presents the protocol for a scoping review examining potential subjective and objective changes in HCPs documentation after using PAEHRs. METHODS: This scoping review will be carried out based on the framework of Arksey and O'Malley. Several databases will be used to conduct a literature search (APA PsycInfo, CINAHL, PubMed, and Web of Science Core Collection). Authors will participate in screening identified papers to explore the research questions: How do PAEHRs affect HCPs' documentation practices? and What subjective and objective changes to the clinical notes arise after patient access? Only studies that relate to actual use experiences, and not merely prior expectations about PAEHRs, will be selected in the review. Data abstraction will include but will not be limited to publication type, publication year, country, sample characteristics, setting, study aim, research question, and conclusions. The Mixed Methods Appraisal Tool will be used to assess the quality of the studies included. RESULTS: The results from this scoping review will be presented as a narrative synthesis structured along the key themes of the corpus of evidence. Additional data will be prepared in charts or tabular format. We anticipate the results to be presented in a scoping review at a later date. They will be disseminated at scientific conferences and through publication in a peer-reviewed journal. CONCLUSIONS: This is the first scoping review that considers potential change in documentation after implementation of PAEHRs. The results can potentially help affirm or refute prior opinions and expectations among various stakeholders about the use of PAEHRs and thereby help to address uncertainties. Results may help to provide guidance to clinicians in writing notes and thus have immediate practical relevance to care. In addition, the review will help to identify any substantive research gaps in this field of research. In the longer term, our findings may contribute to the development of shared documentation guidelines, which in turn are central to improving patient communication and safety. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/46722.