Law Faculty Scholarship

Document Type

Article

Publication Date

2023

Abstract

This study examines patients’ perspectives on alternative approaches to notifying individuals and obtaining permission for the research use of electronic health record (EHR) data. As EHR systems increasingly support large-scale health research, questions arise regarding how best to balance scientific progress with patient autonomy, privacy, and trust. Using qualitative interviews with 120 patients across four socioeconomically diverse counties in the southeastern United States, the researchers explored attitudes toward three primary models of permission: General Notification, Broad Permission, and Categorical Permission. Participants evaluated the advantages and disadvantages of each approach from multiple perspectives, including those of patients, researchers, and healthcare organizations. The findings indicate that most participants viewed all three models as potentially acceptable, though Broad Permission—providing patients with a clear yes/no choice about the use of their EHR data—was most frequently identified as the most appropriate approach. Participants valued transparency, respect for patient autonomy, and trust in healthcare institutions while also recognizing the importance of facilitating efficient research. At the same time, concerns emerged regarding the complexity of granular consent models, the potential for misunderstanding notification mechanisms, and the privacy risks associated with large-scale data use. The study highlights the importance of clarity, visibility, and trust-building measures when implementing policies governing the research use of EHR data and underscores the need for ethical governance frameworks that incorporate patient perspectives while maintaining the feasibility of health research.

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