abstract
Report

Community-Based Infrastructure for Inclusive Research: Democratizing Access to Research

Portrait of Esther Krofah

Esther Krofah

Executive Vice President, Milken Institute Health
Esther Krofah is the executive vice president of Health at the Milken Institute, leading FasterCures, Public Health, the Future of Aging, and Feeding Change. A recognized expert in health policy, biomedical innovation, and clinical research, Krofah has extensive experience shaping health initiatives that unite diverse stakeholders, foster collaboration, and motivate action toward shared goals.
A smiling female-presenting person with short, gray hair wearing a pearl necklace against a plain brown background

Freda Lewis-Hall

Freda Lewis-Hall, MD, a pioneer in medicine and leadership, has been on the front lines of health care for more than 40 years as a clinician, researcher, and leader in the biopharmaceuticals and life sciences industries.
A smiling light-skinned female-presenting person withdark hair wearing a black turtleneck shirt against a blurred background

Annalisa Jenkins

Annalisa Jenkins, MD, is a life sciences thought leader with more than 25 years of biopharmaceutical industry experience. Jenkins served as president and CEO of Dimension Therapeutics, a leading NASDAQ-listed gene therapy company that was acquired by Ultragenyx in November 2017.
Topics
Inclusivity and Human Capital
Health
Health Equity
Medical Research and Innovation
Clinical Trials
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FasterCures’ work, spurred by the COVID-19 pandemic, identified numerous challenges in both the publicly and privately funded research ecosystems that make it difficult for established players to sustain and scale efforts to move research opportunities closer to communities—to make an “ecosystem of excellence” out of “islands of pilots.” We have highlighted solutions that could help create efficiencies, improve connectivity among research stakeholders, and better serve the needs of community partners.   

As with previous issue briefs in this series, FasterCures conducted research and held a virtual dialogue to explore strategies for democratizing access to clinical research and continuing to foster more person-centric, inclusive clinical trials. Several themes are emerging:

  • Proven players and pathways exist for engaging participants in research and improving community health. The clinical research ecosystem needs to “catch up with the community” and sustainably engage and support them.
  • New players are creating opportunities to engage participants in a more data-driven, personalized way, offering access to research and health care to individuals who have historically been excluded from clinical trials.
  • Nontraditional partners are offering unique insight into patients’ experiences and priorities and are adding value for them to participate in research.
  • New platforms and systems allow us to identify and prioritize outcomes that matter most to patients, capture those outcomes in clinical trials and regulatory processes, and design research that is accessible to broader populations.
  • We need to make the business case—and those with the money and power in the system need to sign on—to make this movement a reality.

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