Fear of the unknown & the potential for misinformation about medical research may dissuade many patients from participating in clinical trials.
Patients as People
“Do you know what is important to the lives and experiences of patients with lupus? Do you know who the patient is as a person before they enroll in a clinical trial?” asked Monique Gore-Massy, national lupus advocate/global patient consultant.
Mrs. Gore-Massy explained specific ways to attract diverse patients to clinical trials, such as talking with them about proposed trial protocols, communicating with them even when they don’t meet criteria for a specific trial, using digital spaces to connect with them and involving patients in the development of patient education materials. She also suggested reaching out to community partners and primary care doctors who have long-term relationships with their patients.
Several speakers advised health professionals to look at each patient in a holistic manner, seek to understand the people who are important in their lives and view clinical trial involvement with patients as a means to advance science and to become a part of, and engage deeply with, the lupus community.
A Focus on Equity
Richardae Araojo, RDML, PharmD, MS, associate commissioner for Minority Health and director of the Office of Minority Health and Health Equity (OMHHE), U.S. Food & Drug Administration (FDA), Rockville, Md., provided the event’s keynote address. She described the work of her office in engaging with a diverse group of patients. Its general goal is to make health equity a reality for all patients across many medical specialties and areas of health.
Dr. Araojo discussed the myriad means by which the OMHHE provides patient-oriented educational materials, including fact sheets in multiple languages, brochures, infographics, web pages, listening sessions and podcasts. She also discussed the OMHHE Enhance Equity Initiative, which has three main aims:
- To support efforts to enhance diversity in clinical trials;
- To increase data available on diverse groups that include those of varying ethnicity, race, age, disability status and geographies; and
- To amplify the FDA’s communication with diverse consumers and stakeholders to understand patient preferences and unmet needs.
Additionally, the FDA supports the Health Equity Innovation Award. This grant supports research that strengthens and advances minority health and health equity research, specifically to increase knowledge on how to support diversity in clinical trials, datasets and collections of patient stories. Learn more online.
Increasing Awareness
Saira Z. Sheikh, MD, Linda Coley Sewell Distinguished Professor of Medicine, University of North Carolina, Chapel Hill, described the ACR Training to Increase Minority Enrollment in Lupus Clinical Trials with Community Engagement (TIMELY) program.
