Experiences of Elderly Mental Health Patients and Their Care Partners Using a Proxy Account to Access Open Notes: Qualitative Study (Preprint)

BACKGROUND Elderly patients with serious mental illnesses, such as cognitive disorders, often rely on family members or spouses (care partners, CP) to meet their healthcare needs. CPs frequently lack essential information to fully understand the patient's illness and effectively support its treatment. Open notes provides patients with digital access to their healthcare professionals' (HCPs’) clinical notes and is associated with many positive outcomes, such as increased adherence and empowerment. Older patients who use open notes may, however, encounter usage barriers such as limited digital literacy. Recent developments allow CPs to access open notes (proxy access) and receive valuable information, which holds significant potential for improving the care of older patients. OBJECTIVE This study explores experiences, barriers and opportunities of older mental health patients and their CPs related to using open notes. Furthermore, influencing factors and interdependencies are identified. METHODS Older patients (n=10) and their CPs (n=10) were provided with online proxy access to clinical documentation through a web-based patient portal. In-depth qualitative interviews (n=20) were conducted to explore experiences with this access. Data analysis was conducted in accordance with the constructivist grounded theory approach. RESULTS The prerequisites for using open notes with proxy access are sufficient digital literacy on the part of the patient and/or CP, as well as the establishment of a trusting relationship between patients and CPs. Access to open notes enables patients and CPs to gain a deeper understanding of the illness and its treatment, while also facilitating enhanced contact with HCPs. This results in greater involvement in the treatment process, but may also prompt chances in relationship dynamics: CPs are better equipped to support patients in their healthcare, but may also tend to monitor or control them through open notes. As a result, the introduction of open notes is accompanied by mixed feelings. CONCLUSIONS It is of utmost importance to provide elderly patients with comprehensive access to open notes in order to preserve their health autonomy. However, the involvement of CPs through proxy access is of great value in improving the care of elderly patients, especially those with cognitive impairments. CLINICALTRIAL The study was registered with the German Register of Clinical Studies (No. DRKS00030188).