Women's Health Research Progress, Pitfalls, and Promise (2010) / Chapter Skim
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In 1985, the Public Health Service Task Force on Women's Health Issues concluded that "the historical lack of research focus on women's health concerns has compromised the quality of health information available to women as well as the health care they receive." Since the publication of that report, there has been a transformation in women's health research -- including changes in government support of research, in policies, in regulations, and in organization -- that has resulted in the generation of new scientific knowledge about women's health. Offices on women's health have been established in a number of government agencies.1 Government reports and reports from other organizations, including the Institute of Medicine (IOM)
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with funds for the IOM "to conduct a comprehensive review of the status of women's health research, summarize what has been learned about how diseases specifically affect women, and report to the Congress on sug gestions for the direction of future research." In response, the OWH requested that the IOM conduct a study of women's health research; the charge to the committee for the project is presented in Box S-1. In response to that request, the IOM convened a committee of 18 members who had a wide variety of expertise, including expertise in biomedical research, research translation, research communication, disabilities, epidemiology, healthcare services, behavioral and social determinants of health, health disparities, nutrition, public health, women's health, clinical decision making, and such other medical specialties as cardiovascular disease (CVD)
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Marked differences in the prevalence of and mortality from various conditions in women who experience social disadvantage due to race and ethnicity, lack of education, low income, and other factors have been documented. The differences stem from a variety of social determinants, including differential exposure to stressors and violence, which are more common in more disadvantaged communities.
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Mortality from breast cancer has decreased in the last 20 years. Consumer demand and involvement and increased funding have spurred breast-cancer re search at the molecular, cellular, and animal levels as well as clinical trials and TABLE S-1 Conditions Discussed by Committee, Categorized by Extent of Progress Conditions on Which Research Has Contributed to Major Progress Breast Cancer Cardiovascular Disease Cervical Cancer Conditions on Which Research Has Contributed to Some Progress Depression HIV/AIDS Osteoporosis Conditions on Which There Has Been Little Progress Unintended Pregnancy Maternal Morbidity and Mortality Autoimmune Diseases Alcohol and Drug Addiction Lung Cancer Gynecological Cancers Other than Cervical Cancer Non-Malignant Gynecological Disorders Alzheimer's Disease
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In addition, during the last few years a vaccine that is effective in preventing infection by human papillomavirus, the virus that causes most cervical cancer, was developed. The vaccine was developed and brought into clinical practice through research on the basic biology of the virus and its relationship to cervical cancer in human cells and animals and through epide miologic studies of cervical cancer's etiology.
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Looking at the set of conditions on which little progress has been made -- including unintended pregnancy; autoimmune disease; alcohol-addiction and drug-addiction disorders; lung, ovarian, endometrial, and colorectal cancer; non malignant gynecologic disorders; and Alzheimer's disease -- the committee tried to identify characteristics or explanations for the lack of progress. The committee could not determine specifically why progress was seen for some conditions and not others, but it considered a number of potential reasons, including degree of attention and subsequent research funding from government agencies, consumer advocacy groups, and Congress; availability of interested researchers trained in a given field; adequacy of understanding of the underlying pathophysiology of a condition; availability of sensitive and specific diagnostic tests and screening programs to identify persons who are at risk for or who have a condition; mor 2The committee considered whether to discuss unintended pregnancy as a health outcome or a determinant of health.
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The postmenopausal hormone therapy and the calcium and vitamin D components of the WHI were randomized clinical trials that were based on the findings from such observational research. In addition, the observational studies led to animal and in vitro studies aimed at elucidating the pathophysiology of conditions and identifying potential treatments.
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Barriers to translation of findings on women's health include barriers that impede translation of science to practice more generally, such as the iterative nature of research in which inconsistent or contradictory results often are published before a clear picture emerges; social and cultural opposition to some new treatments or approaches; entrenched financial or other interests that favor the status quo or a specific approach; and lack of reimbursement for new treatments or practices. Patients themselves faced with a multitude of research findings and complex decisions can have difficulty in weighing new options for their health.
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Research findings have changed the practice of medi cine and public-health recommendations in several prominent contexts, includ ing changes in standards of care for women. There have also been decreases in mortality in women from breast cancer, heart disease, and cervical cancer.
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Finding 1 Investment in women's health research has afforded substantial progress and led to improvements in women's health with respect to such important conditions as some cancers and heart disease. Greater progress in women's health has oc curred in conditions characterized by multipronged research involving molecular, animal, and cellular data; in observational studies to identify effects in the overall population; and in clinical trials or intervention studies from which evidencebased conclusions on treatment effectiveness can be drawn.
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Recommendation 2 The National Institutes of Health, the Agency for Healthcare Research and Quality, and the Centers for Disease Control and Prevention should develop targeted initiatives to increase research on the populations of women that have the highest risks and burdens of disease. Finding 3 The incidence, prevalence, morbidity, or mortality associated with a number of conditions -- for example, unintended pregnancy, maternal mortality and morbid ity, nonmalignant gynecologic disorders, alcohol- and drug-addiction disorders, autoimmune diseases, and lung, ovarian, and endometrial cancer -- have not improved.
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Inadequate enforcement of recruitment of women and of reporting data by sex has fostered suboptimal analysis and reporting of data on women from clinical trials and other research. That failure has limited possibilities for identifying potentially important sex or gender dif ferences.
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Finding 6 The translation of research findings into practice can be delayed or precluded by various barriers -- the complexity of science and research and challenges in com municating understandable and actionable messages, social or political opposi tion to advances for nonmedical reasons, fragmentation of health-care delivery, health-care policies and reimbursement, consumer confusion and apprehension, and so on. Many of those barriers are seen in connection with translation of research in general, but some have aspects that are peculiar to women, and few studies have been conducted to examine how to increase the speed or extent of the translation of findings related specifically to women's health into clinical practice.
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Relevant knowledge from studies of communication often is not used by researchers, funders, providers, and public-health professionals to target health messages and information to women. Recommendation 7 The Department of Health and Human Services should appoint a task force to develop evidence-based strategies to communicate and market health messages that are based on research results to women.
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