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Underrepresented Community Leaders Outline How to Improve Diversity and Inclusion in Biomedical Research

In a new report published this morning by the Personalized Medicine Coalition, a group of more than 60 leaders, including 38 from communities historically underrepresented in biomedical research, outline what health care researchers can do to better engage diverse populations in the studies that are used to determine which preventive and treatment interventions will work best for which patients.

To integrate participants from historically underrepresented communities into research, the group recommends that scientists partner with community leaders who are connected with a broader cross-section of potential participants and take steps to correct disparities in electronic health records and other real-world evidence sources that are used to make decisions about the care that patients may receive. The group made eight recommendations across the two priority areas, as follows:

Recommendations for Better Engaging Historically Underrepresented Biomedical Research Participants

Empower Community Engagement in Research

  1. Provide resources for community-based organization (CBO) programs to enhance research participation.
  2. Empower and provide necessary support to CBOs to deliver training in research competency to their communities and to deliver diversity and cultural competency training to researchers.
  3. Increase funding for Federally Qualified Rural Health Centers, Urban Indian Health programs, and rural health clinics.
  4. Require a Community Impact Board to provide consultation within Institutional Review Board (IRB) deliberations, and include two community representatives on an IRB.
  5. Foster the recruitment of investigators from diverse backgrounds to conduct personalized medicine research through research sponsor-based initiatives.


Improve the Collection and Use of Inclusive Health Data

  1. Examine and highlight gaps in existing real-world data sources, and intentionally collect underrepresented biomedical research community data to fill those gaps.
  2. Modify and improve systems to capture and share data on social determinants of health in electronic health records.
  3. Develop and provide resources for community programs designed to ensure that research information is collected, used, and shared responsibly.


“Adopting these recommendations, which reflect the perspectives of communities on how to engage patients from all walks of life in efforts to study the promise of emerging biomedical interventions, will go a long way to ensure that physicians have the information necessary to develop personalized health care plans for their patients,” said PMC President Edward Abrahams.