WOMEN’S HEALTH RESEARCH

PROGRESS, PITFALLS, AND PROMISE

Committee on Women’s Health Research

Board on Population Health and Public Health Practice

INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.
www.nap.edu



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WOMEN’S HEALTH RESEARCH PROGRESS, PITFALLS, AND PROMISE Committee on Women’s Health Research Board on Population Health and Public Health Practice

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THE NATIONAL ACADEMIES PRESS 500 Fifth Street NW Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. This study was supported by Contract HHSP23320042509XI, TO# HHSP2332080003T, be - tween the National Academy of Sciences and the Department of Health and Human Services. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the authors and do not necessarily reflect the view of the organizations or agencies that provided support for this project. Library of Congress Cataloging-in-Publication Data Institute of Medicine (U.S.). Committee on Women’s Health Research. Women’s health research : progress, pitfalls, and promise / Committee on Women’s Health Research, Board on Population Health and Public Health Practice. p. ; cm. Includes bibliographical references. ISBN 978-0-309-15389-8 (Book) — ISBN 978-0-309-15390-4 (PDF) 1. Women—Health and hygiene—Research. I. Title. [DNLM: 1. Women’s Health—United States—Guideline. 2. Clinical Trials as Topic— United States—Guideline. 3. Health Services Research—methods—United States— Guideline. 4. Health Status—United States—Guideline. WA 309 AA1] RA564.85.I565 2010 362.1082—dc22 2010040695 Additional copies of this report are available from the National Academies Press, 500 Fifth Street NW, Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom. edu. Copyright 2010 by the National Academy of Sciences. All rights reserved. Printed in the United States of America The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin. Cover credit: Cover painting is reprinted with permission from the artist, Alberto Schunk. Suggested citation: IOM (Institute of Medicine). 2010. Women’s Health Research: Progress, Pitfalls, and Promise. Washington, DC: The National Academies Press.

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“Knowing is not enough; we must apply. Willing is not enough; we must do.” — Goethe Advising the Nation. Improving Health.

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The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examina - tion of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the Na - tional Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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COMMITTEE ON WOMEN’S HEALTH RESEARCH NANCY E. ADLER, Ph.D. (Chair), Professor of Medical Psychology, Director, Center for Health and Community, University of California, San Francisco ELI Y. ADASHI, M.D., M.S., FACOG, Professor of Medical Science, The Warren Alpert Medical School, Division of Biology and Medicine, Brown University, Providence, RI SERGIO AGUILAR-GAXIOLA, M.D., Ph.D., Director, Center for Reducing Health Disparities, and Professor of Internal Medicine, School of Medicine, University of California, Davis HORTENSIA AMARO, Ph.D., Associate Dean and Distinguished Professor, Bouvé College of Health Sciences, and Director, Institute on Urban Health Research, Northeastern University, Boston, MA MARIETTA ANTHONY, Ph.D., Associate Director, Women’s Health Programs, Arizona Center for Education and Research on Therapeutics, and Director, Women’s Health Critical Path Institute, Rockville, MD DIANE R. BROWN, Ph.D., Executive Director, Institute for the Elimination of Health Disparities, University of Medicine and Dentistry of New Jersey, School of Public Health, Newark NANANDA COL, M.D., M.P.P., M.P.H., FACP, Director, Center for Outcomes Research and Evaluation, Maine Medical Center, Portland SUSAN CU-UVIN, M.D., Professor of Obstetrics and Gynecology and Medicine Director, The Immunology Center, The Miriam Hospital, Brown University, Providence, RI DENISE L. FAUSTMAN, M.D., Ph.D., Director, Immunology Laboratory, Massachusetts General Hospital, and Associate Professor of Medicine, Harvard Medical School, Boston, MA JOHN R. FINNEGAN, Ph.D., M.A., Professor and Dean, School of Public Health, University of Minnesota, Minneapolis WILLIAM R. HAZZARD, M.D., Professor of Medicine, Division of Gerontology and Geriatric Medicine, Department of Veteran Affairs Puget Sound Health Care System, Seattle, WA JAYE E. HEFNER, M.D., Associate Physician, Departments of Internal Medicine and Physical Medicine and Rehabilitation, Spaulding Rehabilitation Hospital, Boston, MA JEANNE MIRANDA, Ph.D., Professor, Department of Psychiatry and Biobehavioral Sciences, University of California, Los Angeles LORI MOSCA, M.D., M.P.H., Ph.D., Professor of Medicine, Columbia University Medical Center, and Director, Preventive Cardiology, NewYork- Presbyterian Hospital, New York 

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HERBERT PETERSON, M.D., Professor and Chair, Department of Maternal and Child Health, Gillings School of Global Public Health, University of North Carolina, Chapel Hill ETTA D. PISANO, M.D., Kenan Professor of Radiology and Biomedical Engineering, Director, Biomedical Research Imaging Center, Vice Dean for Academic Affairs, and Director of the North Carolina Translational Research Center, University of North Carolina School of Medicine, Chapel Hill (until June 30, 2010); Vice President for Medical Affairs and Dean, College of Medicine, Medical University of South Carolina, Charleston (after July 1, 2010) ALINA SALGANICOFF, Ph.D., Vice President and Director, Women’s Health Policy and KaiserEDU.org, Kaiser Family Foundation, Menlo Park, CA LINDA G. SNETSELAAR, R.D., Ph.D., L.D., Endowed Chair, Associate Head for Admissions and Curriculum, and Professor in the Department of Epidemiology, College of Public Health, University of Iowa, Iowa City Study Staff MICHELLE C. CATLIN, Ph.D., Study Director MORGAN A. FORD, Program Officer (until October 2009) JENNIFER A. COHEN, Program Officer (from June 2010) ALEJANDRA MARTÍN, Research Assistant (from April 2010) KATHLEEN McGRAW, Senior Program Assistant NORMAN GROSSBLATT, Senior Editor REBEKAH E. GEE, M.D., M.P.H., Norman F. Gant/American Board of Obstetrics and Gynecology IOM Anniversary Fellow (from November 2009) ROSE MARIE MARTINEZ, Sc.D., Director, Board on Population Health and Public Health Practice vi

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Reviewers This report has been reviewed in draft form by persons chosen for their diverse perspectives and technical expertise in accordance with procedures ap - proved by the National Research Council’s Report Review Committee. The pur- pose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards of 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 for their review of this report: Chloe E. Bird, Senior Behavioral and Social Scientist, RAND Johanna T. Dwyer, Professor of Medicine (Nutrition) and Community Health, Tufts University School of Medicine and Friedman School of Nutrition Science and Policy, Director, Frances Stern Nutrition Center, Tufts Medical Center, Senior Scientist, Jean Mayer Human Nutrition, Research Center on Aging at Tufts University Archondoula (Archelle) Georgiou, Independent Consultant Daniel F. Hayes, Clinical Director, Breast Oncology Program, Stuart B. Padnos Professor in Breast Cancer Research, University of Michigan Comprehensive Cancer Center Bernadine P. Healy, Health Editor and Columnist, US News and World Report Victor W. Henderson, Professor of Health Research and Policy (Epidemiology) and of Neurology and Neurological Sciences, Stanford University ii

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iii REVIEWERS Lewis H. Kuller, Distinguished University Professor of Public Health, Department of Epidemiology, University of Pittsburgh JoAnn Manson, Chief, Division of Preventive Medicine, Brigham and Women’s Hospital, Professor of Medicine and the Elizabeth F. Brigham Professor of Women’s Health, Harvard Medical School Carolyn M. Mazure, Professor of Psychiatry, Associate Dean for Faculty Affairs, Director, Women’s Health Research at Yale, Yale School of Medicine C. Noel Bairey Merz, Chair, Women’s Ischemic Syndrome Evaluation Initiative, Director of the Women’s Heart Center and the Preventive and Rehabilitative Cardiac Center, Cedars-Sinai Medical Center David P. Pryor, Medical Director, Aetna Natalie Rasgon, Professor, Psychiatry and Behavioral Science and Obstetrics and Gynecology, Stanford School of Medicine Nancy E. Reame, Mary Dickey Lindsay Professor of Nursing, Columbia University Rita Redberg, Director, Women’s Cardiovascular Services, University of California San Francisco Medical Center Elizabeth L. Travis, Associate Vice President of Women Faculty Programs, Mattie Allen Fair Professor in Cancer Research, and Professor of Experimental Radiation Oncology, The University of Texas M. D. Anderson Cancer Center Nancy Fugate Woods, Professor, Biobehavioral Nursing and Health Systems, University of Washington Although the reviewers listed above have provided many constructive com- ments and suggestions, they were not asked to endorse the conclusions or rec- ommendations, nor did they see the final draft of the report before its release. The review of the report was overseen by Ellen Wright Clayton, Vanderbilt University, and Georges C. Benjamin, American Public Health Association. Ap- pointed by the National Research Council and Institute of Medicine, they were responsible for making certain that an independent examination of the report was carried out in accordance with institutional procedures and that all review com - ments were carefully considered. Responsibility for the final content of the report rests entirely with the authoring committee and the institution.

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Preface My colleagues on the committee reviewing progress in women’s health re- search and I each work in our own area of this vast domain and appreciated the opportunity to look at the range of research that has been done and whether it has made a difference in health care delivery, in public health approaches, and in women’s health. While frustrated by the impossibility of doing justice to the work, we were privileged to have the opportunity to review much of it and to get the overall outlines of the field. The subtitle of our report on Women’s Health Research: Progress, Pitfalls, and Promise captures the conflicting evaluations and feelings we all experienced in reviewing the status of research on women’s health over the past two decades. It is not by accident that we listed progress first. It was encouraging and gratifying to see how much has been learned. Not only do we know a great deal more about the etiology and course of specific diseases that affect women’s health, but our understanding of women’s health itself has become more multifac- eted and nuanced. The concept of women’s health has expanded beyond a narrow focus on disorders associated with the female reproductive system to encompass other diseases that create a significant burden in women’s lives. These diseases are more common or more serious in women than in men, have distinct causes or manifestations in women than in men, have different outcomes or treatments in women than in men, or cause high morbidity or mortality in women. This broader approach to women’s health and related research moves toward a woman-centered view rather than a disease-centered view. It highlights the importance of considering quality of life rather than simply survival or mortal - ity in evaluating the success of treatments and interventions. It has also revealed the inequities in the extent of disease among women from different sociodemo - ix

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x PREFACE graphic groups, and of the uneven distribution of benefit from research advances and new treatments. Research has also broadened to include studies that take into account not only biological sex as a determinant of disease, but also gender; this expanded view encompasses and highlights the importance of social, psychologi - cal and behavioral influences. The substantial progress in our understanding of the range of determinants of women’s health has, in many cases, been translated into better treatments and decreases in incidence and prevalence of some conditions; these are reviewed in this report. In a few instances, there were breakthroughs that the committee considered to be “game-changers,” but in most cases there were smaller advances that followed from an accumulation of knowledge from a range of different types of studies. While impressed by the progress that has occurred, the committee was also distressed by the number of pitfalls, particularly in the translation of findings into practice and policy, and in the health disparities among women. Some of these pitfalls derive from problems in the current organization of research (for example, institutes within the National Institutes of Health [NIH] that are primarily focused on specific diseases) and of health care (for example, fragmentation of care, misalignment of financial incentives). Others reside in the many problems of the health delivery system; it is yet too soon to know how well the just-passed reform bill will address these in general or in relation to women’s health. Other challenges arise in the clear communication of complex research findings in a media context that thrives on sound bites and controversy. Because these problems have been the focus of many Institute of Medicine (IOM) reports and are not specific to women’s health, we only acknowledge them briefly in the report. The committee ended its work feeling hopeful about the promise of future improvements in the health of women. Some of the changes at NIH (for example, the focus on translational research and cross-institute initiatives) should be par- ticularly helpful for women’s health. There is accumulating knowledge of the broad set of determinants of women’s health, including data on their risk factors, epidemiology and pathophysiology of diseases, functioning, and well-being. The recommendations made in this report, if implemented, would accelerate those advances. The committee faced a number of challenges. Given the broad charge to the committee and the large amount of relevant research, we could not conduct a comprehensive review of the literature on all potential health conditions and determinants, or even for any single health condition or determinant. This report, therefore, should not be considered as a comprehensive review of any specific topic, but as a highlight of some of the relevant research which the committee used to draw general conclusions and make recommendations. The absence of a discussion of any condition is not meant to diminish its potential importance for women’s health or for the women who are affected by those conditions. Every

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xi PREFACE day new research findings are published, so this report reflects the state of the science when we wrote our report. We realize and, in fact, hope that new results will emerge that we could not capture in this report. I am extremely appreciative to the members of this committee for their hard work: Eli Adashi, Sergio Aguilar-Gaxiola, Hortensia Amaro, Marietta Anthony, Diane Brown, Nananda Col, Susan Cu-Uvin, Denise Faustman, John Finnegan, William Hazzard, Jaye Hefner, Jeanne Miranda, Lori Mosca, Herbert Peterson, Etta Pisano, Alina Salganicoff, and Linda Snetselaar. This committee faced a challenging task of coming to consensus despite a broad variety of backgrounds and expertise, and it worked diligently to ensure the numerous facets of women’s health research were properly covered and addressed. I would also like to thank the IOM staff, especially study director Michelle Catlin and her team, Morgan Ford, Katie McGraw, Alejandra Martín, and Norman F. Gant/American Board of Obstetrics and Gynecology/IOM Anniversary Fellow Rebekah Gee. Without their dedicated work this report would not have been possible. I am grateful as well to those who reviewed the report and provided thoughtful comments that improved the final report. In addition, I want to thank the individuals who presented to the committee at open sessions: Wanda Jones, US Department of Health and Human Services; Vivian Pinn, National Institutes of Health; Kathleen Uhl, Food and Drug Admin- istration; Shakeh Kaftarian, Agency for Healthcare Research and Quality; Phyllis Greenberger, Society for Women’s Health Research; Diana Zuckerman, National Research Center for Women and Families; Cindy Pearson, National Women’s Health Network; Mona Shah, Professional Staff Member, United States Senate Committee on Health, Education, Labor, and Pensions; Kerri D. Schuiling, Amer- ican College of Nurse-Midwives; Linda Lipson, Department of Veterans Affairs; Elizabeth Yano, Department of Veteran Affairs Greater Los Angeles; Jacquelyn C. Campbell, The Johns Hopkins University School of Nursing; Madelyn Fernstrom, University of Pittsburgh Medical Center; Beverly Rockhill Levine, University of North Carolina, Greensboro; and Dennis G. Fryback, University of Wisconsin, Madison. Those individuals provided the committee with background informa - tion and expertise that enriched our understanding of the issues. The committee hopes that this report will foster future research and efforts to continue the excellent work that has already been done, and also to fill present gaps in knowledge. Women’s health is fundamental to the overall health of the entire population. Given the multiple roles women play in society, to invest in the health of women is to invest in the well-being and progress of society. Nancy E. Adler, Chair Committee on Women’s Health Research

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Contents SUMMARY 1 1 INTRODUCTION 15 Background, 15 Charge to the Committee, 25 The Committee’s Approach to Its Charge, 26 Organization of This Report, 31 References, 31 2 RESEARCH ON DETERMINANTS OF WOMEN’S HEALTH 35 Behavioral Factors, 37 Social and Community Factors, 56 Societal Factors, 65 Conclusions, 71 References, 72 3 RESEARCH ON CONDITIONS WITH PARTICULAR RELEVANCE TO WOMEN 95 Conditions on Which Research Has Contributed to Major Progress, 97 Conditions on Which Research Has Contributed to Some Progress, 126 Conditions on Which Little Progress Has Been Made, 143 Conclusions, 170 References, 171 xiii

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xi CONTENTS 4 METHODOLOGIC ISSUES IN WOMEN’S HEALTH RESEARCH 221 Study Design, 221 Subject Sampling, 222 Outcome Measures, 227 Analysis, 228 Methodologic Lessons from the Women’s Health Initiative, 229 Summary, 231 Conclusions, 232 Recommendations, 233 References, 234 5 TRANSFORMING DISCOVERY TO IMPACT: TRANSLATION AND COMMUNICATION OF FINDINGS OF WOMEN’S HEALTH RESEARCH 241 Translation of Findings into Practice, 241 Communication, 249 Case Studies in Translation and Communication, 251 Conclusions, 262 Recommendations, 262 References, 263 6 SYNTHESIS, FINDINGS, AND RECOMMENDATIONS 273 Is Women’s Health Research Studying the Most Appropriate and Relevant Determinants of Health?, 273 Is Women’s Health Research Focused on the Most Appropriate and Relevant Diseases, Disorders, Conditions, Outcomes, and End Points?, 275 Is Women’s Health Research Studying the Most Relevant Groups of Women?, 279 Are the Most Appropriate Research Methods Being Used to Study Women’s Health?, 280 Are the Research Findings Being Translated in a Way That Affects Practice?, 282 Are the Research Findings Being Communicated Effectively to Women?, 283 Gaps in Women’s Health Research, 284 Committee’s Key Findings and Recommendations, 285 References, 290

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x CONTENTS APPENDIXES A AGENDAS FOR PUBLIC MEETINGS 293 B MORTALITY STATISTICS 297 C SELECTED STUDIES OF WOMEN’S HEALTH* 305 *The contents of Appendix C are provided on the CD in the back of the book and are available online at http://www.nap.edu/catalog.php?record_id=12908.

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