Names: Panagiota Kontari, Sophie Gibbons, Simon Pilinger, Elizabeth Ford, Benjamin Fell
Using electronic health records (EHRs) as a source of real-world health data in research has vast potential for public good. Record-level data access (RLDA) provides further analysis utility beyond that of aggregate data, however, often raises concerns among patients and the public, particularly in the mental health domain.
Akrivia Health’s de-identified psychiatric EHR dataset of >3.8million patients offers a unique research opportunity. Co-developing a model for RLDA with our Patient and Public Involvement (PPI) team, we sought to integrate patients’ attitudes and expectations around health data sharing for research.
We held a 3-hour in-person session and a 2-hour online session with 6 members of Akrivia’s PPI team, presenting information about potential uses of RLDA, steps to RLDA, benefits, and addressing common concerns. Participants discussed their views and completed written feedback forms, which were thematically reviewed by two researchers.
Key feedback themes included: praise for transparency; hesitancy around consent and legal uses of data; implementation of a pilot scheme; co-production with PPI members to review applications for RLDA; increased emphasis of legal controls; handling of data missingness; consequences of misuse; lay summary of outputs.
PPI members were largely favourable of the proposed RLDA model but expected a commitment to transparency and patient involvement. Our findings were used to guide the development of a pilot version of RLDA under a secondment framework.