Low participation in cancer research and clinical trials is an ongoing national problem that contributes to cancer health disparities. Nationally, only about two to five percent of minorities participate in clinical trials.
One primary reason most patients don’t participate in clinical trials, studies suggest, is that they were not invited or asked to participate.
Current research highlights the importance of educating research teams on patient and community engagement, cultural sensitivity and implicit bias (the attitudes or stereotypes that affect our understanding, actions, and decisions in an unconscious manner) — as part of a strategy to improve study accrual and retention.
A recently launched study/pilot program led by medical sociologist and assistant professor Nadine Barrett, PHD — “Just Ask: Diversity in Clinical Research Training Program” — will, over the next year, be refining a content-specific curriculum and beta-testing the training with 120 Duke oncology research faculty and staff to help build these skills.
Interventions to engage the local community to participate as partners in all aspects of research and clinical trials are growing, and the DCI Office of Health Equity, founded in 2012, has been at the forefront of these interventions, said Barrett, who was OHE's founding director and now serves the DCI as associate director of Community Engagement and Stakeholder Strategy.
“What we haven’t focused on as much is ensuring our research teams are trained up in such a way that they can engage diverse populations in a meaningful way,” said Barrett. “With the support of a $71,000 grant from the V Foundation, we are refining a curriculum that focuses on building knowledge, awareness, skills and implementation strategies to address a lack of or limited engagement with racially and ethnically diverse populations who could be potential research participants and collaborators in research.”
Five focus groups will be held in February, March and April, to map out the training. A committee of experts that includes Judy Seidenstein (Duke University School of Medicine's Chief Diversity Officer) and Benjamin Reese, PhD, (Vice President of Office for Institutional Equity) — both of whom are global leaders in diversity inclusion training — will help guide the study.
Following a beta test of the training this summer in Durham using role playing, outcomes will be measured. The study will also extend to other sites on the east coast, with a webinar-type version of the training to be simultaneously administered. The ultimate goal of the program, Barrett said, is a “shift in behavior and an environment that is conducive to diverse recruitment and retention in clinical research participants.”
V Foundation funding will go toward salaries for staff implementing the study and will also cover stipends for Duke Cancer Institute’s Office of Health Equity Community Advisory Council who, as part of the grant, will co-develop and disseminate two community and DCI-branded newsletters to increase patient access to oncology clinical research studies, trials/biobanking, and evidence-based cancer resource tools and activities.
The council is comprised of 22 individuals representing diverse perspectives — race, ethnicity, class, religion, geography, sexuality/identity, and more — across the cancer spectrum. They are educators, health professionals, researchers, faith leaders, grass-roots organizers, cancer survivors/patients, and community advocates. The council provides their rich perspectives, guidance, feedback, and facilitate access to researchers within the DCI, and also helps DCI promote community and outreach programming to increase understanding and involvement in clinical trials and research programs.