Ethics of Referral Relationships in Clinical Research Recruitment
Saturday, October 14, 2023
1:15 PM – 2:30 PM ET
Location: Galena (Fourth Floor)
Recruitment challenges in clinical research are widespread: almost 1 out of 5 trials in the United States fail to reach patient participant accrual goals, particularly for traditionally underrepresented groups. Such challenges jeopardize studies’ scientific and social value, as their results may lack overall statistical power or may not be generalizable to diverse populations. Referral relationships—a formal relationship between a study team and a non-research focused entity (e.g., a federally qualified health center or community hospital) that involves the regular referral of prospective participants in selected research protocols—may help alleviate these challenges. For example, the National Cancer Institute Community Cancer Centers Program allowed researchers to address structural barriers to trial participation by increasing medical providers’ engagement and improving outreach to rural and racial/ethnic minority communities. Despite their potential to increase recruitment and diverse representation, referral relationships pose their own ethical challenges. Here, we discuss key ethical considerations for their implementation. Because referral relationships grant privileged trial access to patients of referring clinics, principles of fair participant selection should guide such relationships, with particular attention to the inclusion of and burdens faced by underrepresented groups. Researchers should also establish collaborative partnerships with referring clinics to ensure that their studies address concerns relevant to the study population, as well as to provide clinic staff with the opportunity to actively contribute to the research process. Overall, when implemented ethically, referral relationships can help address trial recruitment challenges and ensure fair access to research opportunities.
Annette Rid, MD, PhD – Bioethics – National Institutes of Health; Christine Grady – Bioethics – National Institutes of Health; Aisha langford, PhD, MPH – Population Health – NYU Grossman School of Medicine