Amy Knopf
The National Academies of Sciences, Engineering, and Medicine recently released a Congressionally-mandated report, Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups, which recommends urgent action by the United States government, academia, industry, communities and others to right historic wrongs and achieve more equitable health outcomes.
Amy Knopf, an assistant professor in the Indiana University School of Nursing, served on the 12-member committee, which convened in December 2020. She is available to speak to the impacts of this report.
“The report describes the enormous costs of underrepresentation in research, not only to individuals but also to society,” Knopf said. “Our committee’s economic model suggests that if diversifying clinical trials results in even a one percent reduction in health inequities in three common chronic illnesses, the country would save tens of billions of dollars over the next 30 years.”
Knopf said the report also reviews the known barriers to and facilitators of representation in clinical research and outlines 17 recommendations for stakeholders across the research ecosystem to take immediate and long-term action.
Five overarching conclusions, based on a comprehensive analysis of the research, were identified by the report committee:
- Improving representation is urgent.
- Improving representation requires investment.
- Improving representation requires transparency and accountability.
- Improving representation is the responsibility of everyone involved.
- Creating a more equitable future entails a paradigm shift.
The full report is available online.
The committee’s goals aligned closely with Knopf’s research agenda, which is focused on engaging underrepresented groups in clinical studies. During her five years at IU, she has obtained $2.6 million in external funding to study how to engage marginalized populations in clinical trials for sensitive and stigmatizing health problems, like HIV. A particular focus is on the engagement of minors in clinical trials.
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