November 21, 2022 | Office of the President & Chief Research Officer

Dear Teammates,

Equitable access to healthcare for diverse populations must continue to serve as a guiding priority for the U.S. healthcare system. We only need to look as far as the COVID-19 pandemic to witness social, ethnic, and racial inequities in both care and outcomes and the harmful effects of root health disparities. As researchers, our critical role in creating a more just and inclusive system starts with developing creative strategies to increase access to research participation. When we prioritize the representation of people from all groups and communities in our research, we can generate evidence and develop therapeutics and devices that impact more patients. I want to highlight some of the approaches to inclusive research utilized by members of our exemplary Manne Research Institute faculty.

Showing empathy and truly listening to patients’ concerns, relating to patients as people, and not identifying them by their disease or condition can help build the trust needed between researchers and prospective participants. These are key approaches that A. Kyle Mack, MD, Director of the Cooperative Sickle Cell Donor Program, takes in building diverse pools of research participants for his investigations on the genetic underpinnings of disease. The Black community, specifically, can harbor mistrust stemming from the Tuskegee syphilis study and the legacy of Henrietta Lacks among many examples. Kyle finds he can often bridge this trust gap by appealing to a sense of culture and community, framing research trials as the opportunity to benefit not only the participant but also family, friends, and neighbors who are, or will be, in similar positions. Above all, Kyle works to identify with his patients and their families, no matter their backgrounds. Building the skills of allyship and working to find commonalities with patients are critical steps for any medical practitioner. In Kyle’s case, he often shares his experiences as the parent of a child who participated in a peanut allergy treatment trial that generated valuable insights for his family, community, and colleagues. 

For Robert Liem, MD, MS, Director of the Comprehensive Sickle Cell Program, the discussion is really about how we recognize and overcome logistical barriers at the patient and investigator levels. Robert emphasizes the importance of optimizing institutional and investigator infrastructure. This can include communications training to anticipate patient concerns, using medical interpreters who are trained in explaining research, creating culturally appropriate enrollment materials, hiring racially/ethnically diverse and bilingual research staff, and developing staffing strategies to increase participant retention. Robert is encouraged that putting these structures in place can nurture the connections of diverse people—particularly those among at-risk populations—to participation opportunities in research studies.

William Muller, MD, PhD, Attending Physician of Infectious Diseases and Scientific Director of the Office of Clinical and Community Trials, has been influential in expanding representation within clinical trials by working to improve data tracking among their study participants, finding ways to bring trials to where potential participants live, and assessing the effects of different approaches on improving diversity in trial participation. Ultimately, it is about striking a balance between the diversity of the patients being studied and the patients being treated. For the clinical trials of COVID-19 vaccines in children, William and his study team constructed a registry of potentially interested participants prior to offering enrollment. They selectively offered participation to children living in communities that had higher pandemic-related stress than to those living in less-affected communities. While this approach resulted in a diverse racial and ethnic population for the study, the team will continue to evaluate it and other strategies they take in future studies to improve their ability to achieve desired outcomes.

As we strive for a more inclusive environment for research participants, remember that we are a trusted resource and partner located in a culturally and economically diverse city. Being part of a diverse community affords opportunities to engage and serve people from groups traditionally underrepresented in research study participation. We have a great obligation to develop and deliver solutions. Let us challenge ourselves to break down the barriers to equitable research participation and access to ensure we have the evidence needed to best serve our patients in the future. 

With kindness and respect,

Pat