Building Community Support for Clinical Trials
Building community support for clinical trial participation can be challenging in any circumstance. It can be especially difficult when working with hard to reach populations such as those suffering from chronic illnesses like sickle cell disease.
Sickle Cell Disease CTN
SCD is an inherited chronic illness in which the red blood cells are shaped like a sickle. This blocks blood flow and causes pain and other health problems. According to CDC, it affects “approximately 100,000 Americans. SCD occurs among about 1 out of every 365 Black or African-American births. SCD occurs among about 1 out of every 16,300 Hispanic-American births. About 1 in 13 Black or African-American babies is born with sickle cell trait (SCT).” The CDC also says that the average age of death among people with SCD was about 43 years for women and 41 for men. The saddest fact is that about 1 in 6 deaths occurred in those under age 25. The need to conduct clinical trials with adolescents and children adds to the difficulty of conducting clinical trials research.
ASH Research Collaborative
This is why the American Society for Hematology Research Collaborative (ASH RC) positioned community engagement at the heart of its work building a clinical trials network (CTN) for sickle cell disease (SCD). ASH RC has purposefully sought to engage various groups, including patients, parents, other caregivers, and those impacted by SCD across the age spectrum, in their efforts to build the clinical trials network. For example, ASH RC hosted eight community workshops with community engagement activities and community engagement coordinators to build momentum and better understand barriers to participation in clinical trials. They are setting up community advisory boards (CABs) to guide each of their clinical trial units. CAB members play a pivotal role in the CTN, not only serving as liaisons to the broader community but also providing key input on research protocols under consideration by the CTN.
Our team helped move their team to achieve a stronger system so they could take the next step in ASH RC’s community engagement efforts. ASH RC staff coaching included developing strategies for drawing out opinions and thoughts from community members during clinical trials site qualification visits. They also shored up gaps in the effort to ensure everyone’s voices were represented. In addition, GHLiaisons developed a roadmap for the monthly CAB meetings that will support training CAB members on the clinical research process, scientific protocol review, and how to translate their knowledge and participation into serving as ambassadors for SCD clinical trials.
About the Author
Dr. Lynda Sagrestano is a lead consultant at GHLiaisons. She has more than 25 years of experience developing community engagement initiatives and grants management for community organizations.