Society for Women's Health Research

The Society for Women’s Health Research (SWHR) is a non-profit organization in the United States whose mission is to improve the health of all women through research, education and advocacy. Founded in 1990, SWHR brought to national attention the need for the appropriate inclusion of women in major medical research studies and the need for more information about conditions affecting women exclusively, predominantly, or differently than men.

Based in Washington, D.C., SWHR advocates for greater public and private funding for women’s health research and the study of sex differences that affect the prevention, diagnosis and treatment of disease. SWHR also promotes the appropriate inclusion of women in medical research studies; promotes the analysis of research data for sex differences; and informs women, health care providers, and policy makers about contemporary women’s health issues through media outreach and periodic briefings, conferences and special events.

History

SWHR was founded in 1990 by a group of physicians, medical researchers and health advocates who wanted to bring attention to the myriad of diseases and conditions that affect women uniquely. Women’s health, until then, had been defined primarily as reproductive health. Women were not routinely included in most major medical research studies and scientists rarely examined how the symptoms, diagnosis, progression, and treatment of diseases, such as heart disease and lung cancer, might be different for women.

For its first two years, SWHR did not have a professional staff and operated as a volunteer collective. In late 1993, SWHR opened official headquarters in Washington, D.C., and hired its first professional staff.

To change the way research is conducted, SWHR first worked to influence the major federal agencies (the National Institutes of Health, the Food and Drug Administration, and the U.S. Department of Health and Human Services) that fund or influence health and medicine research. These agencies also set the tone for research nationally, influencing how research is conducted and which topics are studied.

From its inception, SWHR effectively lobbied Congress, leading to a series of Government Accountability Office (GAO, which stood for General Accounting Office until July 2004) reports, legislation and administrative changes at federal agencies to improve women’s health research. Key developments included:

At the National Institutes of Health

*A 1990 GAO report found NIH failed to implement 1986 policies, which had urged inclusion of women in clinical research and analysis of results by sex.
*Later in 1990, the NIH implemented requirements for the inclusion of women in clinical research and established the Office of Research in Women’s Health.
*The NIH Revitalization Act became law in 1993, requiring inclusion of women in all clinical research and analysis of results by sex for Phase III clinical trials.
At the Food and Drug Administration

*A 1993 GAO report on the inclusion of women in the clinical trials used by the FDA in evaluating drugs for marketing approval found women are significantly underrepresented and data are not analyzed for sex differences in response to drugs.
*Later in 1993, the FDA issued “Guideline for the Study and Evaluation of Gender Differences in the Clinical Evaluation of Drugs,” encouraging the inclusion of women in safety and dosing studies and requiring inclusion in efficacy studies. The guideline also required analysis of data on sex differences.
*A 2001 GAO audit of FDA records revealed eight of the last 10 drugs withdrawn from the market caused more adverse events in women.
*Further GAO audits in 2001 of FDA records found that 30 percent of the study documents examined failed to fulfill the requirements for presentation of outcome data by sex and nearly 40 percent did not include the required demographic information, demonstrating the FDA had not effectively overseen the presentation and analysis of data related to sex differences in drug development.
*A 2003 study by the FDA’s Office of Women’s Health found that nearly equal numbers of men and women are participating in clinical trials.
In addition to these federal developments, SWHR initiated in 1996 a proposal requesting that the Institute of Medicine (IOM) evaluate available research on sex differences and chart a direction for sex-based biology. The result was a 2001 report, “Exploring the Biological Contributions to Human Health: Does Sex Matter?,” which concludes that sex matters in health “from womb to tomb” and the exploration of sex differences holds the promise of greater understanding of human biology and significant improvements in health and health care for both women and men.

Programs

SWHR maintains three programmatic areas – scientific programs, public policy, and communications – to accomplish its mission.

cientific Programs

The scientific programs department works with researchers and clinicians in the public and private sector to promote and support the field of sex-based biology. SWHR sponsors periodic conferences, meetings and workshops, providing forums to discuss the role biological sex plays in health and physiological function.

SWHR established the Organization for the Study of Sex Differences (OSSD) in 2006. OSSD is a scientific membership society that advances the study of sex differences and their implications for health and health care.

The scientific programs department manages SWHR’s Isis Fund for Sex Based Biology, a series of networks to foster interdisciplinary basic and clinical research on sex and gender differences. The fund was a direct response to the 2001 IOM report. There are currently two networks in operation on “Sex Differences in Metabolism” and “Sex Differences in the Musculoskeletal System.” A network on “Sex, Gender, Drugs, and the Brain” completed work in 2007.

SWHR periodically publishes articles and reports in scientific and health trade publications to educate researchers and health care providers about sex differences in health.

From 1991-2003, SWHR sponsored an annual Scientific Advisory Meeting which updated the scientific and health care communities on recent research on sex differences in biology. From 2000-2006, SWHR sponsored an annual conference on Sex and Gene Expression (SAGE). Before OSSD was established, the SAGE conferences provided a forum for basic and clinical researchers to share findings on sex-based biology.

SWHR established in 2006 the “Society for Women’s Health Research Medtronic Prize for Scientific Contributions to Women’s Health.” The annual $75,000 prize recognizes a woman scientist or engineer for her contributions to women’s health. It encourages women scientists and engineers to research issues uniquely related to women’s health and rewards women who have devoted a significant part of their careers to this area.

SWHR administers the RAISE Project, which works to ensure that qualified women are nominated for all available awards. The goal is to increase the status of women in science, medicine, and engineering through enhanced recognition and rewards.

Public Policy

The public policy department directs SWHR’s advocacy efforts to ensure that women’s health issues remain a priority on the national agenda.

SWHR holds frequent briefings for members of Congress and their staffs on important health issues that are impacted by congressional policies and funding decisions. SWHR also testifies before congressional committees and provides comment on legislation and regulatory proposals related to women’s health and research.

SWHR’s major initiatives include increasing funds for women’s health research commensurate to the rate of increases for all biomedical research; ensuring adequate funding support for the federal agencies that support women’s health, including the National Institutes of Health, the Centers for Disease Control and Prevention, and the Food and Drug Administration; and encouraging permanent authorization for women’s health offices at these and other agencies, including the Department of Health and Human Services.

Supporting its advocacy work, SWHR maintains the Women’s Health Research Coalition (WHRC), an advocacy network of leaders at academic medical, health and scientific institutions and other supportive organizations, united to encourage coordination and funding for women's health research.

Public Education

The communications department manages SWHR’s outreach and education efforts for the general public, which include media outreach, periodic public education campaigns, a Web site ( [http://www.womenshealthresearch.org www.womenshealthresearch.org] ), regular online moderated discussions ( [http://live.womenshealthresearch.org live.womenshealthresearch.org] ), print and electronic newsletters, a biweekly news service distributed to the media for their free use, and special events, including conferences for consumers.

SWHR’s public education campaigns cover a wide range of topics from lung cancer to clinical trials participation to health literacy. The campaigns use varying methods to reach the public, including media outreach, Web sites, print materials, and public service announcements.

Since 2003, SWHR has annually presented the “Excellence in Women’s Health Research Journalism Awards” to honor journalists who excel in providing the public with valuable health research information. The awards aim to encourage media coverage of medical research findings that is accurate and appropriately represented.

In January 2006, SWHR published its first book for consumers, “The Savvy Women Patient: How and Why Sex Differences Impact Your Health.” The book is a guide to health problems and treatments unique to women of all ages and focuses on how women’s health differs from men’s.

External links

* Society for Women’s Health Research (http://www.womenshealthresearch.org)
* Society for Women’s Health Research on MySpace (http://www.myspace.com/womenshealthresearch)
* Society for Women’s Health Research on YouTube (http://www.youtube.com/womenshealth)
* Society for Women’s Health Research on Facebook (http://apps.facebook.com/causes/beneficiaries/2286)
* Society for Women’s Health Research on Blogspot (http://womenshealthresearch.blogspot.com/)
* Organization for the Study of Sex Differences (http://www.ossdweb.org)
* RAISE Project (http://www.raiseproject.org)
* [http://womenhealth.medical-dictionaries.org/ Women Health Dictionaries] Medical terms and phrases related to pediatrics and gynecology
Public Education Campaigns
* Big 3 for Baby and Me (http://www.thebig3.org)
* Her Cancer (http://www.hercancer.com)
* Her Healthy Life (http://www.herhealthylife.org)
* Life ABC (http://www.lifeabc.org)
* Some Things Only a Woman Can Do (http://www.womancando.org)
* Talk IBS (http://www.talkibs.org)


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