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Abbreviation | SWHR |
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Founded | 1990 |
Founder | Florence Pat Haseltine |
Location | |
Website | swhr |
The Society for Women's Health Research (SWHR) is a national non-profit organization based in Washington, D.C. SWHR is the thought leader in research on biological differences in disease and is dedicated to transforming women's health through science, advocacy, and education.[ citation needed ]
Founded in 1990 by Florence Haseltine, PhD, MD, SWHR aims to bring national attention to the need for the appropriate inclusion of women and minorities in major medical research studies and the need for more information about diseases and conditions affecting women exclusively, predominantly, or differently than men. It also promotes the analysis of research data for sex and ethnic differences; and informs women, healthcare providers, and policy makers about contemporary women's health issues through media outreach, briefings, conferences, and special events.
As a result of SWHR's work, women and minorities are now included in medical research and clinical trials; scientists are researching the ways in which health conditions and diseases affect men and women differently and why. Through SWHR's use of evidence-based research and multi-pronged policy and public education efforts, as well as the involvement of health care providers and policy makers dedicated to improving women's health, sex differences is now a national priority.
SWHR was founded by Florence Haseltine [1] as the Society for the Advancement of Women's Health Research in 1990. When Haseltine began working at the National Institutes of Health (NIH), she was told that her "role was to champion the field of obstetrics and gynecology," which at the time were under-represented in research. In 1985, NIH lacked sufficient in-house expertise and funding for academic scientists. When her friend, Congresswoman Rosa DeLauro, developed ovarian cancer, Haseltine seized the opportunity to promote the need for more research into conditions affecting women.
In the spring of 1989, Dr. Haseltine gathered friends and colleagues from medical and scientific organizations across the country to address this critical issue. They congregated at the American College of Obstetricians and Gynecologists (ACOG) and agreed on the need not only for more gynecological research at NIH but also for research regarding women's health in general. This meeting gave rise to SWHR.
In 1990, due to biases in biomedical research, the health of American women was at risk. SWHR's first Board of Directors made it their priority to confront this injustice. They worked with the Congressional Caucus for Women's Issues, its Executive Director - Leslie Primer, and Congressman Henry Waxman (D-CA) to persuade the General Accounting Office (GAO; now the Government Accountability Office) to address the issue. They recommended that GAO evaluate NIH's policies and practices regarding the inclusion of women and minorities in clinical trials.
SWHR ensured that its dedicated leadership included a diverse group of health care providers and others concerned with research and health care equity, to provide a range of perspectives. Included in the initial gathering at ACOG and later on the first SWHR Board were physicians and researchers specializing in cardiology, mental health, and obstetrics-gynecology, as well as nurses, lawyers, and public policy advocates involved and interested in women's health. In 1993, SWHR opened its official headquarters in Washington, D.C., and hired its first professional staff. Phyllis Greenberger, MSW, was selected as the first Executive Director.
The audit was successfully released at an NIH re-authorization hearing in June 1990. It concluded that the NIH policy of 1986, which encouraged the inclusion of women in clinical trials, had been poorly communicated and misunderstood within NIH and the research community at large. Additionally, it was applied inconsistently across Institutes and was only applied to extramural research (research conducted outside NIH). The GAO report concluded that there was "…no readily accessible source of data on the demographics of NIH study populations." This made it impossible to determine if NIH was enforcing its own recommendations.
SWHR maintains three programmatic areas to accomplish its mission:
In 2015, the Society for Women's Health Research is looking ahead to challenges facing the country with healthcare and health reforms. SWHR will continue to identify the gaps in health care and research that still exist, target those differences and close the gaps. SWHR strives to ensure that women's health remains a high priority on the national agenda and that biological differences become more widely recognized as vital to health care treatment options. Both the size of staff and roster of volunteer leaders have grown over time to assist in these efforts. Medical nursing, and scientific experts from a wide range of disciplines have participated in SWHR's efforts.
SWHR staff relies on current and past members of SWHR Networks, expert resources, contributing authors of the Savvy Woman Patient, presenters from past SWHR conferences, as well as its scientific advisory board and Organization for the Study of Sex Differences (OSSD) members for the medical and technical knowledge that undergirds all its science programs, educational outreach, and advocacy efforts.
SWHR will continue to partner with the widest possible range of healthcare providers, policy makers, and scientists to gather evidence-based information and then communicate it as appropriate to Congress, the scientific research community, health care providers, health advocacy groups and the public.
SWHR works with researchers and clinicians to advance the field of sexual biology. SWHR hosts scientific roundtables to encourage dialogue and research on biological differences.
SWHR established a series of networks working to foster interdisciplinary basic and clinical research on biological differences:
In 2006, the "Society for Women's Health Research Medtronic Prize for Scientific Contributions to Women's Health," [2] the annual $75,000 prize which recognizes a woman scientist or engineer for her contributions to women's health and encourages women to research issues uniquely related to women's health. SWHR created the Organization for the Study of Sex Differences (OSSD), [3] a scientific membership society to enhance the knowledge of sex/gender differences by facilitating interdisciplinary communication and collaboration among scientists and clinicians of diverse backgrounds.
SWHR administers the RAISE Project, [4] which focuses on increase the status of professional women through enhanced recognition of their achievements in science, technology, engineering, medicine and mathematics. In addition to Interdisciplinary Networks, SWHR supports roundtables, workshops, advisory meetings, and pilot research projects on:
As the thought-leader in biological differences research, SWHR is often called upon to offer expert testimony before Congress and to provide guidance on legislative and regulatory matters on women's health. [5]
SWHR runs numerous campaigns, conferences, and media briefings to educate the public on women's health issues. SWHR also publishes a monthly e-newsletter [6] and monthly news service [7] article to keep the public informed about news relevant to women's health and biological differences.
SWHR's website features information on conditions [8] that affect women predominantly or differently than men. They promote the inclusion of women and minorities in clinical trials by educating the public on how to participate and what to expect if they do join a trial. [9]
In January 2006, SWHR published its first book for consumers, The Savvy Woman Patient: How and Why Sex Differences Impact Your Health. This consumer guide informs women about health conditions and treatments that are unique to women and focuses on how women's health differs from men's.
In 2014, SWHR released a national survey of 3,500 women to better understand women's habits and perceptions around breast cancer screening and mammograms, including the motivating factors, obstacles and barriers, emotional impact, and expectations for future testing.
The RAISE Project [10] brings together awards from all different areas of STEM & medicine. It is the only project that lists over 1950 awards as well the winners and breaks down the distribution between men and women. Over 46,000 different recipients have been identified. Some individuals are cited over 30 different times. The RAISE Project data is gathered by systematically searching the websites for posted awards.
Data is collected began in 2005 and shows award listings of scientific societies and relevant professional organizations starting from 1981. The data is "scraped" from the site, entered into a content management system, parsed into awardees, award, year of award, awarding body, and the sex of the recipient. It is not always possible to determine whether someone is male or female by name alone, so it is fortunate for data collection that photographs are usually posted on the website. This has made identification of the sex much easier. Ethnic diversity is not identified.
Data collection began in 2006. Subsequently, information about awardees starting in 1981 was added. Data for the number of women and men in specific fields is obtained from publications of the National Science Foundation for STEM and the Association of American Medical Colleges.
SWHR helped to launch the OSSD Journal of Sex Differences in 2010 and has contributed to the Journal of Women's Health.
Medicine is the science and practice of caring for a patient, managing the diagnosis, prognosis, prevention, treatment, palliation of their injury or disease, and promoting their health. Medicine encompasses a variety of health care practices evolved to maintain and restore health by the prevention and treatment of illness. Contemporary medicine applies biomedical sciences, biomedical research, genetics, and medical technology to diagnose, treat, and prevent injury and disease, typically through pharmaceuticals or surgery, but also through therapies as diverse as psychotherapy, external splints and traction, medical devices, biologics, and ionizing radiation, amongst others.
The National Institutes of Health, commonly referred to as NIH, is the primary agency of the United States government responsible for biomedical and public health research. It was founded in the late 1880s and is now part of the United States Department of Health and Human Services. Many NIH facilities are located in Bethesda, Maryland, and other nearby suburbs of the Washington metropolitan area, with other primary facilities in the Research Triangle Park in North Carolina and smaller satellite facilities located around the United States. The NIH conducts its own scientific research through the NIH Intramural Research Program (IRP) and provides major biomedical research funding to non-NIH research facilities through its Extramural Research Program.
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) is one of the institutes and centers that make up the National Institutes of Health, an agency of the United States Department of Health and Human Services (HHS).
Brigham and Women's Hospital (BWH) is the second largest teaching hospital of Harvard Medical School and the largest hospital in the Longwood Medical Area in Boston, Massachusetts. Along with Massachusetts General Hospital, it is one of the two founding members of Mass General Brigham, the largest healthcare provider in Massachusetts. Robert Higgins, MD, MSHA serves as the hospital's current president.
The National Psoriasis Foundation (NPF) is the world's largest nonprofit organization serving people with psoriasis and psoriatic arthritis. The NPF provides information and services to help people manage their condition while supporting research to find a cure. In addition to serving more than 3 million people annually through patient and professional health education and advocacy initiatives, the NPF has funded more than $10 million in psoriatic disease research grants and fellowships.
Elizabeth Nabel is an American cardiologist and Executive Vice President of Strategy at ModeX Therapeutics and OPKO Health. Prior to this role, she served as President of Brigham Health and its Brigham and Women's Hospital, Professor of Medicine at Harvard Medical School, and Director of the NIH's National Heart, Lung, and Blood Institute.
Eva Lucille Feldman, M.D., Ph.D., F.A.A.N., F.A.N.A. is an American physician-scientist and one of the world’s leading authorities on neurodegenerative disease. Currently, she serves as the Russell N. DeJong Professor of Neurology at the University of Michigan, as well as Director of the NeuroNetwork for Emerging Therapies and ALS Center of Excellence at Michigan Medicine. She was also recently named the James W. Albers Distinguished University Professor of Neurology.
A glossary of terms used in clinical research.
Female genital disease is a disorder of the structure or function of the female reproductive system that has a known cause and a distinctive group of symptoms, signs, or anatomical changes. The female reproductive system consists of the ovaries, fallopian tubes, uterus, vagina, and vulva. Female genital diseases can be classified by affected location or by type of disease, such as malformation, inflammation, or infection.
Marianne J. Legato is an American physician, author, lecturer, and renowned expert in gender-specific medicine, which focuses on understanding how biological sex and gender influence human health and the experience of diseases.
Gender-biased diagnosing is the idea that medical and psychological diagnosis are influenced by the gender of the patient. Several studies have found evidence of differential diagnosis for patients with similar ailments but of different sexes. Female patients face discrimination through the denial of treatment or miss-classification of diagnosis as a result of not being taken seriously due to stereotypes and gender bias. According to traditional medical studies, most of these medical studies were done on men thus overlooking many issues that were related to women's health. This topic alone sparked controversy and brought about question to the medical standard of our time. Popular media has illuminated the issue of gender bias in recent years. Research that was done on diseases that affected women more were less funded than those diseases that affected men and women equally.
The NIH Clinical Center is a hospital solely dedicated to clinical research at the National Institutes of Health campus in Bethesda, Maryland. The Clinical Center, known as Building 10, consists of the original part of the hospital, the Warren Grant Magnuson Clinical Center, and the newest addition, the Mark O. Hatfield Clinical Research Center. The two parts are connected to form one large building.
The World Health Organization (WHO) has defined health as "a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity." Identified by the 2012 World Development Report as one of two key human capital endowments, health can influence an individual's ability to reach his or her full potential in society. Yet while gender equality has made the most progress in areas such as education and labor force participation, health inequality between men and women continues to harm many societies to this day.
Florence Pat Haseltine is a U.S. physician, biophysicist, reproductive endocrinologist, journal editor, novelist, inventor, and advocate for women's health. She has been diagnosed with dyslexia. She built a diverse career in medicine. An associate professor at Yale University, her work specializes in obstetrics and gynecology as well as women's rights and gender bias in medicine. While at Yale, Haseltine established the embryology laboratory, which was one of the early labs to have a successful IVF baby. The Microscope used in the laboratory is now in Historical Collections of the National Museum of Health and Medicine.
Vivian Winona Pinn is an American physician-scientist and pathologist known for her advocacy of women's health issues and concerns, particularly for ensuring that federally funded medical studies include female patients, and well as encouraging women to follow medical and scientific careers. She served as associate director for research on women's health at the National Institutes of Health (NIH), concurrently was the inaugural director of NIH's Office of Research on Women's Health. Pinn previously taught at Harvard University, Tufts University, and Howard University College of Medicine. Since retiring from NIH in 2011, Pinn has continued working as a senior scientist emerita at the Fogarty International Center.
Paula Adina Johnson is a cardiologist and the current president of Wellesley College. She is the first Black woman to serve in this role. The first Black graduate of Wellesley College came in the year 1887, and 129 years later President Johnson became the first Black leader. Prior to her role as president of Wellesley, Johnson founded and served as the inaugural executive director of the Mary Horrigan Connors Center for Women's Health & Gender Biology, as well as Chief of the Division of Women's Health at Brigham and Women's Hospital. Dr. Johnson's background in working for the betterment of women in the field of health led her on a notable path to Wellesley College, a women's college right outside of Boston, where there is an emphasis on the role of women in STEM.
Ayman Al-Hendy, is a professor and director of translational research from Department of Obstetrics and Gynecology, University of Chicago. His branch of medical/surgical knowledge is obstetrics and gynecology, particularly in the spheres of “gene/stem cell therapy”, “reproductive genetics”, and “stem cell biology”.
Janine Austin Clayton is an American ophthalmologist. She is the NIH associate director for research on women's health and director of the Office of Women's Health. Clayton was previously the deputy clinical director of the National Eye Institute.
Erika F. Augustine is an Associate Chief Science Officer and Director of the Clinical Trials Unit at Kennedy Krieger Institute. She was previously an Associate Professor of Neurology and Pediatrics at the University of Rochester Medical Center in Rochester, New York. Augustine co-directed the University of Rochester Batten Center, and was the associate director of both the Center for Health and Technology and the Udall Center of Excellence in Parkinson's Disease Research. Augustine's clinical research and medical practice specialize in pediatric movement disorders. She leads clinical trials for Batten diseases, a group of rare pediatric neurodegenerative disorders, and she has developed a novel telemedicine model to increase the efficacy of remote care for patients with rare diseases.
Sex as a biological variable (SABV) is a research policy recognizing sex as an important variable to consider when designing studies and assessing results. Research including SABV has strengthened the rigor and reproducibility of findings. Public research institutions including the European Commission, Canadian Institutes of Health Research, and the U.S. National Institutes of Health have instituted SABV policies. Editorial policies were established by various scientific journals recognizing the importance and requiring research to consider SABV.