Bethesda, MD – A new report released by the National Association of Community Health Centers (NACHC) and the Deloitte Center for Health Solutions finds that Community Health Centers represent untapped potential for advancing diversity in clinical research and ultimately improving patient outcomes. These are the findings from a new survey of 226 health center chief executive officers (or their designees) and interviews with a wide range of research stakeholders. The focus of the study was on health centers research interest, processes, collaborations, and barriers.
The findings include:
- 87% of health centers are conducting research today or interested in conducting research in the future.
- 94% of health centers identified time or workforce constraints as a top barrier to participation.
- 81% cited funding as a barrier; however, for those not currently conducting research, funding opportunities and new revenue streams were among the top perceived benefits of conducting research.
Equitable and inclusive medical research can help narrow health disparities
As the nation’s largest primary care network, health centers serve 31.5 million patients nationwide,[i] and play an important role in advancing more equitable and inclusive research. More should be done to broaden participation and strengthen the research infrastructure – such as resources, building dedicated staff, and encouraging patient participation and retention. Clinical research is generally not inclusive of racial and ethnic minority groups, as well as other populations experiencing health disparities, including sexual and gender minorities or socially disadvantaged populations.
“Community engagement is a key aspect of broadening research participation. By partnering with Community Health Centers, clinical researchers can enrich the scope and diversity of their research, ultimately leading to better outcomes for patients,” said NACHC President and CEO Kyu Rhee, MD, MPP.
“This data signifies a new, innovative opportunity for clinical research with Community Health Centers at the forefront. By embracing the opportunities to collaborate with health centers, we are collectively working toward a health care research landscape that is more inclusive, equitable, and attuned to the diverse needs of all patients and a future of health where everyone has the opportunity to achieve their full potential in every aspect of their health,” said Dawn Anderson, managing director, Life Sciences Research and Development, Deloitte Consulting LLP.
Barriers cited by Community Health Centers to participating in clinical research
Health centers are often not approached or seen as key partners in the clinical research ecosystem. They have also been wary of participating due to historical ethical concerns and an ongoing lack of transparency (for example, the US Public Health Service Syphilis Study at Tuskegee, among others).[ii] Another barrier is the lack of funding and clinical research infrastructure that inhibits those interested in conducting research from identifying and pursuing clinical research opportunities.
Recommendations for improving Community Health Center participation
The survey finds that systemic change is needed across the US clinical research system to address the lack of diversity among research participants. Moreover, trust should be rebuilt between traditional research institutions and communities. The survey findings identify the resources and support needed to help conduct and sustain these efforts.
- Create opportunities for collaboration
Health centers that are conducting research sometimes do so on their own, but many collaborate with other organizations. Collaborations reduce the staff burden on a single organization and combine organizations’ research expertise, infrastructure, technology, and funding to help enable health centers to conduct research. Potential collaborators include academic institutions, government entities, community-based organizations, health insurance companies, pharmaceutical companies, pharmacies, and other health centers.
- Ensure community input
Health centers are generally trusted by patients and communities. To earn the trust of health centers, collaborators should include community perspectives throughout the research process, from the determination of research questions to the dissemination of research findings.
- Ensure long-term benefits for patients
Once a study is complete, and a medication or intervention works for a patient, access should not be denied due to the patient’s inability to pay. When a drug is not covered under insurance (or the patient doesn’t have insurance) after the drug goes to market, research partners should work to ensure participating patients receive long-term access to the medications they helped develop.
Diverse representation in research, particularly clinical trials, is important for building trust in medical research and institutions, promoting fairness for potential participants and their community, and generating biomedical knowledge of treatment efficacy for all patients.
As one of the health policy research directors interviewed said, “Health centers and their patients have an important story to tell. They can make an important contribution to health equity.”
Methodology: NACHC and the Deloitte Center for Health Solutions collaborated on a survey of 226 health center chief executive officers (or their designees) between May and June 2023. The Deloitte Center for Health Solutions also conducted 22 interviews with a wide range of research stakeholders, including research and clinical leaders from health centers, academic institutions, and research organizations, between July and October 2023, to gain additional insight into research processes and collaborations. Please see www.deloitte.com/us/about for a detailed description of our legal structure.
[ii] Other examples include Henrietta Lacks’ lack of consent for her cells to be used for research and J. Marion Sims experiments on enslaved people. Rebecca Skloot, The Immortal Life of Henrietta Lacks (Picador, 2010); Harriet A. Washington, Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present (Doubleday, 2007), p. 512.
NACHC is the leading innovative change agent collaborating with affiliates and partners to advance Community Health Centers as the foundation of an equitable health care system free from disparities and built on accessible, patient-governed, high-quality, integrated primary care.