Sharing Clinical Notes and Electronic Health Records With People Affected by Mental Health Conditions: Scoping Review

Abstract

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.

Pilot Testing and Evaluation of Participatory Patient Record in Psychiatric Care

“…Yet, the role of these comments for the therapy process needs to be clearly defined. The wish to interact with notes are in line with previous research [4].…”

Usability of the Swedish Accessible Electronic Health Record: Qualitative Survey Study

“…However, this change in the framework has not been enforced, and we continue to see differences between regions. Clinical notes from psychiatric care have, for example, often been excluded from patient access, not only in Sweden [29,30]. As our results indicated, excluding specific parts of the documentation can increase the sense of stigmatization and distrust.…”

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

“…While many adults want full access to their EHR [ 15 ] and report predominantly positive experiences with the PAEHR [ 20 ], there is a clear predominance of fears and concerns among mental health professionals regarding the PAEHR, including an increased clinical burden owing to more documentation efforts [ 20 ]. Professionals are also worried about possible harm triggered by reading the notes [ 20 ] which, in turn could impact negatively on the patient-provider relationship [ 5 ]. One common example of concern is related to patients with severe mental illness reading their EHR online.…”