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Improving Representation in Clinical Trials and Research Building Research Equity for Women and Underrepresented Groups (2022) / Chapter Skim
Currently Skimming:

1 The Committee's Task
Pages 15-22

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From page 15...
... population, often those with the greatest health challenges (or most premature morbidity and mortality) , are less able to benefit from these discoveries because they are not adequately represented in clinical research studies.
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From page 16...
... In short, lack of representation compromises generalizability of clinical research findings to the U.S.population, hinders innovation, compounds low accrual rates causing trials to fail, leads to lack of effective medical interventions, undermines trust, compounds health disparities, and costs the United States billions of dollars each year. Some may note that even if clinical trials look like the population affected by the disease under study, the trials likely are not powered to examine subgroup differences.
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From page 17...
... In addition, the committee commissioned five papers to address various aspects of the Statement of Task. First, to accomplish the economic analysis, the committee worked with authors to commission an economic analysis using the Future Elderly Model to estimate the social costs of health disparities for groups that have historically been underrepresented in clinical trials and clinical research (see Chapter 2 for a summary of this work and Appendix A for the full analysis)
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From page 18...
... The NIH is directed to report to the Committees on this issue and it should include a review of the existing research on the long-term economic ben efits of increasing the participation of women and racial and ethnic minorities in clinical trials and biomedical research, including an analysis of fiscal implications of inclusion on the nation's overall healthcare costs; examine new programs and interventions in medical centers that are currently working to increase participa tion of women of lower socioeconomic status and women who are members of racial and ethnic minority groups; identify programs that are positively addressing issues of underrepresentation; and analyze whether and how those programs are replicable and scalable; and identify more inclusive institutional and informational policies and procedures to improve health outcomes for racial and ethnic minori ties, including health referral forms, continuing education classes, and more. status of clinical trial and clinical research participants, as this analysis is not readily available in the literature (see Chapter 2 for a summary of this work and Appendix B for the full analysis)
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From page 19...
... In addition, the committee's scope was narrowed to clinical trials and clinical research, but the topic of database-based studies is another important area for future work, as these studies also suffer from representation issues and data-reporting issues. The committee recognizes the importance of including the participant, patient, and caregiver voice throughout the research process, from study design and recruitment to the dissemination of findings.
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From page 20...
... To meet our statement of task, and to look beyond it toward a just and equitable society, we use the imperfect language we have to describe and offer resolutions for observable inequities in health outcomes and clinical research. To that end, the committee chose the term underrepresented and excluded populations as the broadest term to refer to the populations and communities that are the focus of this report.
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From page 21...
... ORGANIZATION OF THE REPORT In the chapters that follow, the committee provides an overview of the threats posed by lack of representation in clinical studies, the current status of representation in clinical research participation, and the clinical research ecosystem (Chapter 2) ; offers an overview of the existing landscape of current and past federal policies and practices aimed at addressing this issue (Chapter 3)
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Key Terms

  • ethnic minority
  • health disparities
  • including health
  • research ecosystem
  • minority population

  • underrepresented populations
  • research studies
  • health referral
  • committee commissioned
  • subsequent translational

  • excluded populations
  • structural barriers
  • economic impacts
  • testable hypotheses
  • population affected

  • trial enrollment
  • positively addressing
  • demographic characteristics
  • referral forms
  • translational work

  • draw conclusions
  • federal policies
  • conducting clinical
  • clinical trial
  • including clinical

  • clinical settings
  • clinical studies
  • diverse clinical
  • clinical outreach
  • representative clinical


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