Community Focused Research Organization

Eli Lilly and Company and NEHI address barriers to clinical trial participation by underrepresented groups

June 9, 2022- The Network for Excellence in Health Innovation (NEHI) today announced a collaboration with Indianapolis-based Eli Lilly and Company to form a Community Focused Research Organization (CFRO) to promote diversity in clinical trial participation. This initiative has been made possible through $500,000 in seed funding from Lilly.

Between 15-20 stakeholder organizations, including health systems, academic institutions, and community and faith-based groups in the Indianapolis region will be members of the CFRO and each will have a seat on its board of directors. They will offer diverse perspectives and foster collaborative strategies to close the gaps in health and health care disparities and address barriers to participation in clinical research trials among underrepresented groups.

NEHI will support the CFRO board and facilitate the process through various phases, including producing documentation and educational materials to help scale and replicate the CFRO in other regions of the U.S.

Numerous reports have shown that women, the elderly, and especially racial and ethnic minority groups are underrepresented in clinical trial enrollment relative to the proportion of the population they represent. Black and Hispanic people make up almost 40% of the U.S. population, yet they represent only 2% to 16% of patients in trials[1]. Persistent underrepresentation of racial and ethnic minorities has been reported even in clinical trials related to diseases that disproportionately impact them[2].

“Diverse representation in clinical trials is critical to understanding how medicines work in all possible populations because we know that the effectiveness of various therapies can differ based on a patient’s race, ethnicity, sex, age, and multiple other factors,” said Stacey L. Bledsoe, senior director of clinical trial diversity at Lilly.

NEHI CEO, Wendy Warring said, “NEHI and Lilly have worked together in the past to develop ways to improve the health of specific populations as well as to promote health equity. We are excited to continue this collaborative work to overcome barriers to participation in clinical trials by underrepresented groups, which is critical to the goal of achieving health equity.”

“We believe that the structure of the CFRO will foster community-wide ownership for the mission and the strategies to accomplish that mission, which is crucial to achieving impactful, lasting change, Warning continued. “It is our hope that this project will serve as a model that can be replicated for wider impact across the country.”

About Eli Lilly and Company

Lilly is a global health care leader that unites caring with discovery to create medicines that make life better for people around the world. We were founded more than a century ago by a man committed to creating high-quality medicines that meet real needs, and today we remain true to that mission in all our work. Across the globe, Lilly employees work to discover and bring life-changing medicines to those who need them, improve the understanding and management of disease, and give back to communities through philanthropy and volunteerism. To learn more about Lilly, please visit us at lilly.com and lilly.com/newsroom.

[1] Syneos Health (2019, June 3-6). Disparities have dire implications for precision medicine as we approach a cross-over point in 2060 when non-Caucasians will outnumber Caucasians in the US [Conference Presentation] panel on How to Boost Racial, Ethnic and Gender Diversity in Clinical Research. Bio International Convention 2019, Philadelphia, PA, United States. https://www.syneoshealth.com/sites/default/files/documents/Boosting_Diversity_in_Clinical_Research_FINAL_% 5Bweb%5D.pdf

[2] National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. https://doi.org/10.17226/26479.