Privacy Concerns Regarding Social Risk Screening and Documentation in the Electronic Health Record: A Qualitative Study of Patients’ Perspectives

Objective To characterize patients’ perspectives on privacy on the disclosure, documentation, and visibility of social risk information collected during screening in healthcare settings, and to identify ways to design patient-centered, privacy-protecting screening and documentation systems. Materials and Methods Interviews were conducted with 18 patients from a Midwestern healthcare system who had experienced screening. Interviews were analyzed using a multi-cycle coding process. Results Participants expressed privacy concerns regarding the disclosure, storage, and visibility of social risk information. Patients judged the relevance of social risk information when choosing to disclose and when considering how long they would like these data to remain in the EHR. Disclosure and storage risks identified included embarrassment, the potential for these data to be shared with others or used against patients, and the possibility that patients would be unaware of stored social risk data in the electronic health record (EHR). Patients desired trusting relationships with physicians to facilitate disclosure and the ability to edit or delete stored data to ensure privacy. Discussion Findings highlight privacy-related concerns about social risk disclosure, as well as patients’ desire for control over these data. Trusting patient-clinician relationships and clear policies governing social risk data use may support disclosure. Patients advocated for screening to occur with trusted healthcare staff and control over EHR social risk data. Conclusion Social risk screening and documentation systems must address patients’ privacy concerns, facilitate safe disclosure, and clarify how data are used. Empowering patients with greater control over social risk data may affirm privacy and improve acceptability.