EHR phenotyping for research recruitment: Researcher, IRB, and physician perspectives on approaches to contacting patients

Abstract

ABSTRACT Introduction: Failure to achieve accrual goals is a common problem in health-related research. Electronic health records represent a promising resource, offering the ability to identify a precisely defined cohort of patients who meet inclusion/exclusion criteria. However, challenges associated with the recruitment process remain and institutional policies vary. Methods: We interviewed researchers, institutional review board chairs, and primary care physicians in North Carolina and Tennessee. Questions focused on strategies for initiating contact with potentially eligible patients, as well as recruitment letters asking recipients to opt in versus opt out of further communication. Results: When we asked about initiating contact with prospective participants, qualitative themes included trust, credibility, and established relationships; research efficiency and validity; privacy and autonomy; the intersection between research and clinical care; and disruption to physician–researcher and physician–patient relationships. All interviewees said it was acceptable for researchers to contact patients through their physicians; most said it was acceptable for researchers to contact patients directly. Over half chose contact through physicians as more appropriate. Regarding recruitment letters, qualitative themes included the quality of the participant pool; privacy and control; research efficiency and representativeness; and patients’ opportunity to make their own decisions. All interviewees said asking recipients to opt in to further communication was acceptable; nearly all said opt out was acceptable. Similar proportions chose each approach as more appropriate. Conclusions: Comparing these results to our previous research with patients reveals potential differences in stakeholder perspectives. We offer suggestions for developing balanced approaches that respect patients and facilitate the advancement of science.

Keywords

• Electronic health records
• stakeholder perspectives
• research ethics
• research subject recruitment
• physician–patient relationship
• trust