WOMEN’S HEALTH RESEARCH HEALTH WOMEN’S A FOR 2020 FOR VISION NEW DIMENSIONS AND STRATEGIES: THE FUTURE WITH INTO MOVING MOVING INTO THE FUTURE WITH NEW DIMENSIONS AND STRATEGIES: A VISION FOR 2020 FOR WOMEN’S HEALTH RESEARCH PUBLIC TESTIMONY III VOLUME OFFICE OF RESEARCH ON WOMEN’S HEALTH NATIONAL INSTITUTES OF HEALTH U.S. DEPARTMENT OF HEALTH & HUMAN SERVICES VOLUME III PUBLIC TESTIMONY U.S. DEPARTMENT OF HEALTH & HUMAN SERVICES OF HEALTH DEPARTMENT U.S. OF HEALTH INSTITUTES NATIONAL HEALTH OFFICE OF RESEARCH ON WOMEN’S NIH Publication No. 10-7606-C Moving Into the Future With New Dimensions and Strategies: A Vision for 2020 for Women's Health Research Office of Research on Women’s Health National Institutes of Health VOLUME III PUBLIC TESTIMONY i The views expressed in this volume are solely those of individuals testifying at the public hearings and do not necessarily reflect the positions or judgments of the National Institutes of Health, the U.S. Department of Health and Human Services, or the Administration. U.S. Department of Health and Human Services, Public Health Service, National Institutes of Health, Office of Research on Women’s Health. (2010).Moving Into the Future With New Dimensions and Strategies: A Vision for 2020 for Women's Health Research. Bethesda, MD: National Institutes of Health. NIH Publication No. 10-7606-C Copies of this report and other publications of the Office of Research on Women’s Health are available at no charge from: Office of Research on Women’s Health National Institutes of Health 6707 Democracy Blvd., Suite 400, MSC 5484 Bethesda, Maryland 20892-5484 Fax: 301-402-1798 Voice: 301-496-8176 http://orwhpubrequest.od.nih.gov ii Table of Contents INTRODUCTION 1 PUBLIC TESTIMONY St. Louis Regional Meeting 5 San Francisco Regional Meeting 107 Providence Regional Meeting 252 Chicago Regional Meeting 355 Atlanta Regional Meeting 412 INDEXES Testimony Providers by name 440 Testimony Providers by organization 442 Subject Index 445 iii iv INTRODUCTION The Office of Research on Women’s Health (ORWH) was established in September 1990 in response to congressional, scientific, and advocacy concerns that a lack of systemic and con- sistent inclusion of women in NIH-supported clinical research could result in clinical decisions being made about health care for women based on findings from studies of men—without evi- dence that they were applicable to women. The Office was further established in statute in the NIH Revitalization Act of 1993 (Public Law 103–43). Congress codified the Office’s mission and included directives that expanded its leadership role in identifying and promoting research on women’s health. Since that time, the Office has been the focal point for guiding the national research effort on women’s health issues and is responsible for ensuring that women’s health research priorities are integrated into the wider NIH research agenda. The mission of ORWH is to: 1. advise the NIH Director on matters relating to research on women’s health; 2. strengthen and enhance research related to diseases, disorders, and conditions that affect women; 3. ensure that research conducted and supported by NIH adequately addresses issues regarding women’s health; 4. ensure that women are appropriately represented in biomedical and biobehavioral research studies supported by NIH; 5. develop opportunities for and support recruitment, retention, reentry, and advance- ment of women in biomedical careers; and 6. support research on women’s health issues. To advance a robust research agenda to guide women’s health research at the NIH, ORWH previously initiated two intensive planning initiatives, one beginning in 1991 and a second one in 1997. ORWH called upon experts in the fields of basic and clinical sciences, practitioners interested in women’s health, and representatives of professional and women’s organizations to develop specific and workable recommendations to advance research activities on behalf of the diversity of women and define the research priorities for women’s health research at the NIH. The first research agenda from 1991,The Report of the National Institutes of Health: Opportunities for Research on Women’s Health redefined the parameters of women’s health to encompass the life span going beyond the reproductive system and to better understand sex and gender differences between women and men in development, health, and disease. It also brought attention to the need to focus on populations of women that had been under- represented in clinical research. The 1997 report, Agenda for Research on Women’s Health for the 21st Century, expanded upon the initial scientific agenda for women’s health research and emphasized the relevance of the full spectrum of research from basic to clinical research, epi- demiological and population studies, translation into clinical applications and health outcomes, with continued emphasis on sex and gender comparisons and the introduction of an emphasis on interdisciplinary research on women’s health. 1 Science is dynamic and evolving at a remarkable pace with emerging knowledge from results of investigations and from new concepts of health and disease based on new technologies and approaches to research endeavors. Each decade has brought new discoveries, new under- standing of the intricacies of molecular contributions to health and the workings of the totality of the human body, and new opportunities to leverage the knowledge from science to improve human health and, specifically, women’s health. The first two reports ensured that women’s health rose to prominence within the national psyche, as well as within the research environ- ment. The next 10 years can bring new research advances with improved therapeutics based on sex differences with an expansion of the evidence based clinical application to women’s health care. Achieving new dimensions and innovative strategies for research is an important element of the NIH women’s health research agenda for the future. Moving Into the Future With New Dimensions and Strategies: A Vision for 2020 for Women’s Health Research Ten years after the last women’s health research agenda was updated, the ORWH launched a series of five regional scientific workshops and public hearings to ensure that research on women’s health continues to be on the cutting edge of science, based upon the most advanced techniques and methodologies. Four of the five regional scientific workshops were held during 2009, and the final was in 2010. The meetings were hosted by five universities: 1. Washington University, St. Louis, Missouri, March 4–6, 2009 2. University of California, San Francisco, May 27–29, 2009 3. Women and Infants Hospital/Brown University, Providence, Rhode Island, September 21–23, 2009 4. Northwestern University, Chicago, Illinois, October 21–23, 2009 5. Emory University, Atlanta, Georgia, February 16–17, 2010 The format of each of the regional scientific workshops was designed to promote an interac- tive discussion involving leading scientists from across the nation, women’s health advocates, public policy experts, health care providers, and the general public. Individuals representing the full spectrum of academic institutions, professional associations, advocacy organiza- tions, health care facilities interested in biomedical and behavioral research on women’s health and sex/gender issues, or those wishing to present their personal opinions on these issues were encouraged to provide both written and public testimony at each of the regional meet- ings. In each of the meetings, the ORWH Director challenged conference attendees to think beyond traditional women’s health issues in defining the women’s health research agenda of the future. Participants were asked to give attention to new areas of scientific application, innovative technologies, and sex differences research in basic and laboratory investigations. Clinical questions for which documented answers are still not evident were to be considered in determining research priorities, recognizing the importance of new health care and research paradigms that will be facing the Nation in the years ahead. 2 A total of 37 scientific and career development working groups were co-chaired by research scientists representing 44 academic institutions and 19 NIH institutes, centers and the Office of the Director. Participants came from thirty-three states, and scientists from Great Britain and Australia also contributed to the discussions. Scientific panels and concurrent workshops addressed a wide range of topics, from the interplay of research and health care to specific areas of research, resulting in nearly 400 recommendations. The working group reports and recommendations are found in the companion Volume II to the ORWH Strategic Plan. A key element of each of the regional meetings was the time devoted to receiving public tes- timony. From its earliest establishment, ORWH has actively welcomed input from advocacy organizations, health and disease interest groups, health care providers, and the general pub- lic. Over the years, public testimony has served as an important reality gauge to inform the research agenda-setting process. During the course of the five meetings, 141 organizations and individuals presented written and public testimony, always on the first day of the meeting. The testimonies from the meetings are found in Volume III of the ORWH Strategic Plan. At the conclusion of the five regional workshops, the working group reports and recommen- dations were synthesized by ORWH staff and the resulting document (Vol. 1) was reviewed by three separate groups: (1) the Advisory Committee on Research for Women’s Health (the non-Federal advisory committee to the Director of ORWH); (2) an outside group of experts in women’s health research convened April 14, 2010 at the NIH; and (3) the Coordinating Committee on Research on Women’s Health Research/NIH (composed of NIH institute and center directors or their designees). The final document, entitledMoving Into the Future With New Dimensions and Strategies: A Vision for 2020 for Women’s Health Research, represents the conclusion of an intensive 2-year national planning discussion.