JMIR Publications

ABSTRACT

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. Limited knowledge exists regarding the expectations and motivations of patients with SMI in reading their clinicians’ clinical notes.

Objective:

This study investigates which patient groups, and for what reasons, intend to or refrain from using ORA.

Methods:

ORA was offered to randomly selected patients at three university outpatient clinics in Brandenburg, Germany, which exclusively treat patients with SMI. 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. Additionally, socio-demographic patient characteristics were examined 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 monitor it, and use 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 a contributing factor. 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. Clinical Trial: The study was registered with the German Clinical Trial Register (registration number: DRKS00030188, URL of registry: https://drks.de/search/en/trial/DRKS00030188).