The willing participation of patients in clinical research is a critical element in national efforts to collect health data for precision medicine and large cohort studies. However, recruiting patients is challenging. Clinical data research networks (CDRN) have primarily been used for observational studies, but may be able to enhance recruitment efforts. We need a better understanding of patient motivation and preferences for research participation and their interest in different types of research activities, particularly among those who are already represented in CDRNs. We surveyed a heart failure patient cohort constructed from EHRs in a CDRN to assess research participation. Results showed that CDRN recruitment is feasible. Respondents were most interested in completing a one-time survey and giving a blood sample one time. They were least interested in a study about weight control that require surgery. We found statistically significant associations between race and research activity interests.

Learning Objective: After participating in this session, the learner should be better able to:

1. Learn to leverage EHR resources in a distributed clinical data research network (CDRN) to construct a cohort of patients for survey administration.
2. Learn patients’ perspectives and challenges that affect their willingness to participate in research studies.
3. Discuss how CDRNs can be a source for recruiting for large study cohorts among a geographically diverse population and engaging patients into participating in future studies.


Yong Kyung Choi (Presenter)
University of California Davis

Javier Lopez, University of California Davis
Daniella Meeker, University of Southern California
Lucila Ohno-Machado, University of California San Diego
Katherine Kim, University of California Davis

Presentation Materials: