Perceptions of Primary Care Notes by Patients With Mental Health Diagnoses

DISCUSSION

Compared with patients without mental health diagnoses, primary care patients with mental health diagnoses were similarly enthusiastic about the utility of reading their doctors’ notes online. Giving patients with mental illness access to their clinic notes may help them engage more actively in their treatment.⁷ Additionally, opportunities for improved communication between patient and care provider may enhance trust,⁸ which is particularly important given the stigma surrounding mental illness. Providing patient access to notes could also stimulate clinicians to craft notes that are nonjudgmental, another step in strengthening the patient-doctor relationship.⁹

As with any intervention, the risks of access to certain clinical information in doctors’ notes could at times outweigh the potential benefit. While we noted that patients with mental illness were more likely to worry than patients without mental illness, this association was not significant after adjusting for possible confounders. Ensuring that note contents correspond with visit conversations might reassure apprehensive patients and could even engender greater patient-doctor trust.¹⁰ Patients at imminent risk of self-harm, with profoundly decompensated mental illness, or suffering from intimate partner violence might need to have particular notes blocked from the online portal for safety reasons. Most health systems have protocols for blocking part or all of clinic notes from the patient portal, although HIPAA protects patients’ right to view their medical records with few restrictions.⁷

A primary limitation of this study is that the original OpenNotes study was not specifically designed to investigate the perceptions of patients with mental health disorders. Administrative data was used to identify patients with mental health problems and a broad array of mental health diagnoses was included. There was likely extensive variability in how mental health diagnoses were addressed in clinic notes. Mental illness can be under-recognized and less severe in the primary care setting compared with behavioral health practices.¹¹ It is not known if patients’ perceptions would be different if they read psychiatrists’ or behavioral health providers’ detailed notes rather than primary care providers’ notes. Small numbers in some of the perception categories limit the interpretation of our multivariate analyses. Finally, perceptions were self-reported and gathered from early experiences of patients using secure web portals to access their medical records.

In conclusion, we found that patients with mental health diagnoses had similar perceptions about reading their primary care clinic notes as other patients. Providing online access to all patients, including those with mental illness, might contribute to greater adherence to treatment plans and patient-doctor trust, and potentially help to destigmatize mental illness. However, we need to more fully understand the spectrum of benefits and risks of clinic note access in patients with mental health problems and identify interventions to mitigate potential adverse effects of this new tool.