National Academies Press: OpenBook
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×

Improving Representation in
Clinical Trials and Research

BUILDING RESEARCH EQUITY FOR
WOMEN AND UNDERREPRESENTED GROUPS

Kirsten Bibbins-Domingo and Alex Helman, Editors

Committee on Improving the Representation of Women and Underrep-
resented Minorities in Clinical Trials and Research

Committee on Women in Science, Engineering, and Medicine

Policy and Global Affairs

A Consensus Study Report of

images

THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×

THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001

This activity was supported by contracts between the National Academy of Sciences and the National Institutes of Health (HHSN263201800029I/75N98020F00023). Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.

International Standard Book Number-13: 978-0-309-27820-1
International Standard Book Number-10: 0-309-27820-1
Digital Object Identifier: https://doi.org/10.17226/26479
Library of Congress Control Number: 2022940407

Additional copies of this publication are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu.

Copyright 2022 by the National Academy of Sciences. All rights reserved.

Printed in the United States of America

Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. https://doi.org/10.17226/26479.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×

Image

The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president.

The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. John L. Anderson is president.

The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president.

The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine.

Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×

Image

Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task.

Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies.

For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×

COMMITTEE ON IMPROVING THE REPRESENTATION OF WOMEN AND UNDERREPRESENTED MINORITIES IN CLINICAL TRIALS AND RESEARCH

KIRSTEN BIBBINS-DOMINGO, M.D., Ph.D., M.A.S. (Chair) (NAM),1 Professor and Chair of the Department of Epidemiology and Biostatistics and Lee Goldman, MD Endowed Chair and Professor of Medicine, University of California, San Francisco; Inaugural Vice Dean for Population Health and Health Equity, UCSF School of Medicine

MARCELLA ALSAN, M.D., Ph.D., M.P.H., Professor of Public Policy, Harvard Kennedy School; Co-Director of the Health Care Delivery Initiative Abdul Latif Jameel Poverty Action Lab, Massachusetts Institute of Technology

ARLEEN BROWN, M.D., Ph.D., Professor of Medicine, University of California, Los Angeles; Chief of General Internal Medicine and Health Services Research, Olive View-UCLA Medical Center

GLORIA CORONADO, Ph.D., Epidemiologist and Mitch Greenlick Endowed Distinguished Investigator in Health Disparities Research, Kaiser Permanente Center for Health Research

CARLOS DEL RIO, M.D. (NAM), Distinguished Professor of Medicine, Emory University School of Medicine; Professor of Epidemiology and Global Health, Rollins School of Public Health, Emory University; Executive Associate Dean for Emory University School of Medicine, Grady Health System

XINQI DONG, M.D., M.P.H., Director of the Institute for Health, Health Care Policy, and Aging Research (IFH) and Inaugural Henry Rutgers Professor of Population Health Sciences, Rutgers University

DANA GOLDMAN, Ph.D. (NAM), Dean of the Sol Price School of Public Policy, C. Erwin and Ione L. Piper Chair, and Leonard D. Schaeffer Director’s Chair, Schaeffer Center for Health Policy & Economics, University of Southern California

SHARON K. INOUYE, M.D., M.P.H. (NAM), Professor of Medicine, Harvard Medical School; Milton and Shirley F. Levy Family Chair, and Director, Aging Brain Center, Marcus Institute for Aging Research, Hebrew SeniorLife

JONATHAN JACKSON, Ph.D.,2 Executive Director of Community Access, Recruitment, and Engagement (CARE) Research Center, Massachusetts General Hospital and Harvard Medical School

___________________

1 Designates membership in the National Academy of Sciences (NAS), National Academy of Engineering (NAE), or National Academy of Medicine (NAM).

2 Dr. Jonathan Jackson resigned from the Committee on Improving Representation of Women and Underrepresented Minorities in Clinical Trials and Research, effective June 2, 2021.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×

AMELIA KNOPF, Ph.D., M.P.H., Assistant Professor of Nursing, Indiana University

EDITH A. PEREZ, M.D., Chief Medical Officer of Bolt Therapeutics, Inc.; Professor of Medicine, Mayo Clinic; Director of the Mayo Clinic Breast Cancer Translational Genomics Program

PHYLLIS PETTIT NASSI, B.S., M.S.W., Associate Director for Research and Science, Special Populations, American Indian Program, Huntsman Cancer Institute, University of Utah

JASON RESENDEZ, B.A., President and CEO, National Alliance for Caregiving

SUSAN SCHAEFFER, B.F.A., Founder, President, and CEO of The Patients’ Academy for Research Advocacy

Study Staff

ALEX HELMAN, Ph.D., Study Director and Program Officer, Committee on Women in Science, Engineering, and Medicine

ASHLEY BEAR, Ph.D., Director, Committee on Women in Science, Engineering, and Medicine

LAURA AIUPPA, M.S., Senior Program Officer, Board on Health Care Services

AUSTEN APPLEGATE, Research Associate, Committee on Women in Science, Engineering, and Medicine

JOHN VERAS, Senior Program Assistant, Committee on Women in Science, Engineering, and Medicine (August 2020 to February 2022)

ABIGAIL HARLESS, Senior Program Assistant, Committee on Women in Science, Engineering, and Medicine (from February 2022)

MOLLIE MARR, Ph.D., Mirzayan Fellow, Committee on Women in Science, Engineering, and Medicine

ANNE MARIE HOUPPERT, MSLS, Senior Librarian

Consultants

FRANCHESCA ARIAS, Ph.D., Instructor in Neurology and Assistant Scientist, Harvard Medical School

ADAM BRESS, PharmD., M.S., National Academy of Medicine Fellow in Pharmacy

BRANDON BROWN, Ph.D., M.P.H., Associate Professor, University of California, Riverside

FARAH ACHER KAIKSOW, M.D., M.P.P., Assistant Professor of Medicine, Harvard Medical School

AISHWARYA BHATTACHARYA, M.P.H., Student Research Assistant, Yale School of Public Health

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×

LAURA BOTHWELL, Ph.D., M.Phil., M.A., Associate Research Scientist, Yale School of Public Health

JOCELYN CARTER, M.D., M.P.H., Professor of Medicine, Harvard Medical School

AMBER DATTA, M.P.H., Student Research Assistant, Yale School of Public Health

JAKUB HLÁVKA, Ph.D., Fellow, USC Schaeffer Center for Health Policy & Economics; Research Assistant Professor, Health Policy and Management, USC Price School of Public Policy; Research Fellow, USC Center for Risk and Economic Analysis of Terrorism Events (CREATE)

AARON KESSELHEIM, M.D., J.D., M.P.H., Professor of Medicine, Harvard Medical School

AMY J. H. KIND, M.D., Ph.D., Professor of Medicine, University of Wisconsin School of Medicine and Public Health

NIROOP RAJASHEKAR, B.S., Student Research Assistant, Yale School of Medicine

NICOLE ROGUS-PULIA, Ph.D., M.A., Assistant Professor of Medicine and Surgery, University of Wisconsin School of Medicine and Public Health

BRYAN TYSINGER, Ph.D., Director of Health Policy Microsimulation, USC Schaeffer Center for Health Policy & Economics; Fellow, USC Schaeffer Center; Research Assistant Professor, USC Price School of Public Policy

LESLIE WANG, M.S., Student Research Assistant, Yale School of Medicine

Page viii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×

This page intentionally left blank.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×

Acknowledgments

This Consensus Study Report was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published report as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process.

We thank the following individuals for their review of this report:

Margarita Alegria, Harvard University; Susan Ellenberg, University of Pennsylvania; Ayana Elliott, Gilead Sciences, Inc.; Celia Fisher, Fordham University; Sara Goldkind, Independent Consultant; Gina Green-Harris, University of Wisconsin; Jose Pagán, New York University; Eric Rubin, New England Journal of Medicine; William Schpero, Cornell University; Joshua Sharfstein, Johns Hopkins University; Jonathan Skinner, Dartmouth College; Stephanie Studenski, University of Pittsburgh; and Consuelo Wilkins, Vanderbilt University.

Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations of this report nor did they see the final draft before its release. The review of this report was overseen by Thomas LaVeist, Tulane University, and Eve Higginbotham, University of Pennsylvania. They were responsible for

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×

making certain that an independent examination of this report was carried out in accordance with the standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the authoring committee and the National Academies.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×

Preface

The year the issues in this report, Improving Representation in Clinical Trials and Research, became urgent for me was 2017. I was then chair of the U.S. Preventive Services Task Force (USPSTF)—an independent body charged with reviewing the scientific literature to generate evidence-based guidelines on the use of clinical preventive services. USPSTF guidelines are widely disseminated, and their audience includes patients, clinicians, and policy makers alike. During my tenure, we had issued recommendations on preventing diabetes and common cancers such as breast, colorectal, lung, and prostate that are responsible for considerable morbidity and mortality in the United States, as well as being important contributors to health disparities. Reaching patients and frontline clinicians directly was particularly compelling given the exceptionally strong evidence that clinical interventions work in preventing these diseases and because the Affordable Care Act had ensured that interventions for which evidence was clear would be covered by commercial insurers.

In my formal talks and informal discussions with lay and professional stakeholders, I inevitably encountered a similar pattern of questions:

How confident are you that these recommendations and the evidence on which they are based apply to me and to patients like me?

You are recommending screening for diabetes in those who are overweight or obese, but my Asian patients seem to develop diabetes at lower BMI, what about them?

What about my Latino patients who are developing diabetes at younger ages or my Black patients who are developing colorectal cancer at younger ages—shouldn’t we start screening earlier?

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×

Black women get breast cancer at the same rate as others, but are more likely to die—should we screen differently?

My recurring response was, “Unfortunately, we just don’t have the studies in these populations that allow us to say with certainty whether or how to adapt our prevention guidelines.” While it is true, this answer rang hollow. As a physician caring for patients in an urban safety-net setting and wanting to provide the best evidence-based preventive care, these were my questions as well. Inevitably in these sessions, I would spend as much time on the science as I devoted to reinforcing with patients why they should still trust these guidelines and the process, despite the unrepresentative populations in the evidence base. With clinicians, we discussed how we might adapt the guidelines to the needs of our patient populations, what kind of evidence would be necessary, and how we might advocate together to ensure that coverage was preserved.

The year these issues became personal for me was also 2017. This was the year my father lost his battle with prostate cancer and another very close family member received a new diagnosis of this same disease. Prostate cancer is the most common cancer in men in the United States; its incidence in Black men (like the two in my family) is at least 75 percent higher than men of other races and ethnicities. My father was fortunate to have received care from outstanding physicians and to have had access to clinical trials as his disease advanced. He was a career Army officer, a veteran, and a strong supporter of science and medicine. He had even served as a lay reviewer for federal funding of prostate cancer research. As my father’s journey with prostate cancer ended and another family member’s began coincident with my work on the USPSTF, the stark absence of representation of Black men in prostate cancer research became acutely distressing. Black men constitute 13.4 percent of the U.S. population, have a higher prostate cancer incidence, and die at double the rate of other men in the United States. Yet the screening trials from which the USPSTF derived evidence for prevention included less than 5 percent Black men, and the number in late-stage treatment trials was recently reported at 2.4 percent.

I am grateful to have worked with the excellent members of this consensus committee. All generously volunteered their time and expertise over the past 18 months to develop an approach to this report and to crafting recommendations on improving representation in clinical trials and clinical research. I am grateful to the many experts who shared their knowledge of the complex clinical research landscape in our public meetings and to the outstanding teams that created our four commissioned papers. And I am particularly grateful to the National Academies of Sciences, Engineering, and Medicine staff, led by Dr. Alex Helman, who adroitly guided this complex work during a global pandemic over Zoom, by phone, and via email. Most of all, I am grateful that across the different perspectives and points of view on the nuances of these issues, all who were involved

Page xiii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×

shared an understanding of their importance and producing a report with findings and actionable recommendations that would improve outcomes.

I hope that you will read this report in its entirety, through to the epilogue, where the committee envisions a better world for clinical research. I hope you will read with the intention to work to implement our findings and recommendations in whatever part of the clinical research ecosystem you influence. Whether you are motivated by the goal of producing the highest quality science, by pursuit of fairness and equity in how science might translate into better health for our patients, or by the enormous economic toll of health disparities in the United States, I hope you embrace the urgency of improving representation and inclusion in clinical research.

Kirsten Bibbins-Domingo, Chair

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×

This page intentionally left blank.

Page xviii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×

FIGURES

2-1 Overview of the clinical trial ecosystem

2-2 Average percent of women in trials by year of FDA approval and therapeutic area (n = 287)

2-3 Participation of women in clinical trials supported by NIH institutes (top 10 institutes/centers by 2018 enrollment)

5-1 Improving diversity in enrollment

B-1 Average % of females in trials by year of FDA approval and therapeutic area (n = 287)

B-2 Mean % of females by year of FDA approval (non-gender-specific trials only, n = 255)

B-3 Average % of white patients in trials by year of FDA approval and therapeutic area (n = 287)

B-4 Average % of patients over 65 in trials by year of FDA approval and therapeutic area (n = 287)

B-5 Participation of females in clinical trials supported by NIH institutes (top 10 institutes/centers by 2018 enrollment)

B-6 Share of white participants in clinical trials by NIH institutes (top 10 institutes/centers by 2018 enrollment)

B-7 Share of African American/Black participants in clinical trials by NIH institutes (top 10 institutes/centers by 2018 enrollment)

B-8 Share of Asian participants in clinical Trials by NIH institutes (top 10 institutes/centers by 2018 enrollment)

B-9 Share of Hispanic participants in clinical trials by NIH institutes (top 10 institutes/centers by 2018 enrollment)

B-10a Availability of results among all trials, by primary completion year

B-10b Availability of results among Phase 3 trials, by primary completion year

C-1 Flow chart illustrating process for identification of trials

TABLES

2-1 Adjusted Relative Risks for Key Parameters of Interest with 95% Confidence Intervals

3-1 2020 Life Expectancy at Birth

4-1 How Specific Community-Engagement Opportunities Can Benefit Research Organizations and Communities

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×

This page intentionally left blank.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR1
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR2
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR3
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR4
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR5
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR6
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR7
Page viii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR8
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR9
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR10
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR11
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR12
Page xiii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR13
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR14
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR15
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR16
Page xvii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR17
Page xviii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR18
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR19
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. doi: 10.17226/26479.
×
PageR20
Next: Summary »
Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups Get This Book
×
Buy Paperback | $35.00
MyNAP members save 10% online.
Login or Register to save!
Download Free PDF

The United States has long made substantial investments in clinical research with the goal of improving the health and well-being of our nation. There is no doubt that these investments have contributed significantly to treating and preventing disease and extending human life. Nevertheless, clinical research faces a critical shortcoming. Currently, large swaths of the U.S. population, and those that often face the greatest health challenges, are less able to benefit from these discoveries because they are not adequately represented in clinical research studies. While progress has been made with representation of white women in clinical trials and clinical research, there has been little progress in the last three decades to increase participation of racial and ethnic minority population groups. This underrepresentation is compounding health disparities, with serious consequences for underrepresented groups and for the nation.

At the request of Congress, Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups identifies policies, procedures, programs, or projects aimed at increasing the inclusion of these groups in clinical research and the specific strategies used by those conducting clinical trials and clinical and translational research to improve diversity and inclusion. This report models the potential economic benefits of full inclusion of men, women, and racial and ethnic groups in clinical research and highlights new programs and interventions in medical centers and other clinical settings designed to increase participation.

  1. ×

    Welcome to OpenBook!

    You're looking at OpenBook, NAP.edu's online reading room since 1999. Based on feedback from you, our users, we've made some improvements that make it easier than ever to read thousands of publications on our website.

    Do you want to take a quick tour of the OpenBook's features?

    No Thanks Take a Tour »
  2. ×

    Show this book's table of contents, where you can jump to any chapter by name.

    « Back Next »
  3. ×

    ...or use these buttons to go back to the previous chapter or skip to the next one.

    « Back Next »
  4. ×

    Jump up to the previous page or down to the next one. Also, you can type in a page number and press Enter to go directly to that page in the book.

    « Back Next »
  5. ×

    Switch between the Original Pages, where you can read the report as it appeared in print, and Text Pages for the web version, where you can highlight and search the text.

    « Back Next »
  6. ×

    To search the entire text of this book, type in your search term here and press Enter.

    « Back Next »
  7. ×

    Share a link to this book page on your preferred social network or via email.

    « Back Next »
  8. ×

    View our suggested citation for this chapter.

    « Back Next »
  9. ×

    Ready to take your reading offline? Click here to buy this book in print or download it as a free PDF, if available.

    « Back Next »
Stay Connected!