Over the past decade, more primary care practices have been making medical records, including clinical notes, available to patients through secure electronic portals. In spite of research pointing to the benefits of increased access to records, mental health clinicians have voiced concerns over sharing clinical notes with patients.
In a study published in the Annals of Family Medicine, researchers examined whether or not patients with a mental health diagnosis had a different perception of primary care notes than patients without a mental health diagnosis. Joann G. Elmore, MD, MPH, of the David Geffen School of Medicine at the University of California, Los Angeles, and colleagues hypothesized that there would be no discernible difference in patient perception.
To study these perceptions, researchers analyzed data from an OpenNotes study, which provided patients full electronic access to their medical records at 3 health care systems. After the implementation of OpenNotes, study participants completed a survey that measured their perceptions of reading the physicians’ notes. The survey included responses that were dichotomized as agree/somewhat agree or disagree/somewhat disagree. Survey participants were adult primary care patients with at least 1 clinic visit during the implementation period who reportedly read at least 1 of the online clinical notes.
Of the 2534 patients who completed the survey, 400 were documented as having a mental health diagnosis and 2134 did not have a mental health diagnosis. According to survey results, most patients had positive perceptions about their experience with OpenNotes. The data showed that patients with mental health diagnoses were more likely to report feelings of worry based on viewing their clinical notes; however, after adjustment for variables independently associated with mental health, there were no differences in perceptions between patients with or without the diagnosis.
Overall, patients were enthusiastic about being given access to their clinical notes. As shown in previous research, patients with mental illness who are provided access to their clinical notes may be more actively engaged in their treatment. Additionally, the researchers posit that access to notes may facilitate greater communication and trust between patients and care providers. If providers are aware that patients have access to notes, they may be more inclined to craft nonjudgmental notes, which could further strengthen the patient-doctor relationship.
The investigators noted a few risks associated with access to clinical information. For those with mental health diagnoses, there could be increased feelings of worry based on perceptions of clinical notes. This could be assuaged by ensuring that the contents of notes correspond with conversations during visits to provide context and further trust between patient and doctor. Another risk cited in the study was with regard to patients who are at imminent risk for self-harm or those in situations where there is intimate partner violence. In this case, access to certain notes should be blocked from online records to protect patient safety. Although the Health Insurance Portability and Accountability Act (HIPAA) of 1996 protects patients’ right to view their records with few restrictions, protocols for blocking clinical notes exist in most health systems.
Limitations noted in the study include that the original OpenNotes study was not specifically designed with perceptions of patients with mental health diagnoses in mind and that administrative data used to identify patients with mental health disorders incorporated a broad spectrum of diagnoses. Additionally, the study considered only clinical notes from primary care providers, and it is unknown whether patients’ perceptions would differ based on notes from psychiatrists or behavioral health providers.
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 2018;16(4):343-345.