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Improving Representation in Clinical Trials and Research Building Research Equity for Women and Underrepresented Groups (2022) / Chapter Skim
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Epilogue: Envisioning a New Future
Pages 135-138

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From page 135...
... This epilogue summarizes some of the large, system-level changes that the committee would like to see in order to truly realize an inclusive and representative clinical research landscape in the United States that leads to greater justice and health equity in this nation. The committee believes that to improve representativeness in research effectively and sustainably, progress must be made in both the development of a rigorous science of inclusion and in the pursuit of theoretical frameworks that investigate and challenge the "socio-political determinants of exclusion" (GilmoreBykovskyi et al., 2021)
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From page 136...
... Methodically rigorous approaches are needed to move beyond individual person- and site-specific barriers to facilitate system-level change. This requires a focus and investment in the development of interdisciplinary teams that include community representatives to develop rigorous empiric evaluations of strategies and approaches for driving inclusion in research.
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From page 137...
... (2021) , "Fulfilling justice in research is foundational to cultivating practices that promote health equity through equal valuation of the wellbeing of all persons, the correction of injustices, and providing resources according to need, rather than impartially, to facilitate access to research." In the committee's view, to fully advance representativeness in research, institutions and investigators must recognize the larger systemic context of their work, including historic abuses (e.g., the Tuskegee Syphilis Study)
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Key Terms

  • minority population
  • rigorous science
  • excluded populations
  • theoretical frameworks
  • social justice

  • paradigm shift
  • health equity
  • embracing justice
  • interdisciplinary teams
  • improve representativeness

  • community health
  • include community
  • research access
  • intentional efforts
  • unless action

  • community engagement
  • phrase underrepresented
  • driving inclusion
  • community representatives
  • research process

  • develop rigorous
  • rigorous approaches
  • historic abuses
  • research landscape
  • design participation

  • moves beyond
  • beyond individual
  • including historic
  • institute regional
  • conceptualizing research


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