Alina Salganicoff (Henry J. Kaiser Family Foundation) and co-study director Rose Marie Martinez presented a summary of the key issues discussed in the workshop as a basis for developing a research agenda for the future. Salganicoff identified several cross-cutting issues that emerged as workshop themes:
- More good, accessible, and consistent data that illuminate the issues in women’s health are needed and critically important. A major block of missing data and epidemiological work relate to subgroups of women. Though there is a lot of evidence on differences between subgroups, there is no clear sense of the mechanisms by which these different factors might affect the health of different groups of women.
- Many analyses of all health-related data are not stratified by gender, which is needed to understand women’s health outcomes.
- Research reports on women’s health issues are inconsistent. Journals and government agencies—particularly the National Institutes of Health and the U.S. Food and Drug Administration—need to be more transparent and open, and they need to more widely share their information. Agencies need to find ways to encourage or require the needed gender-based analyses. There may be a possibility of finding relatively inexpensive ways of accomplishing this goal, such as re-analyses of data in published studies that did not examine the influence of gender: in many cases, the gender-based data were collected but not analyzed.
- The need for gender-based data and refined measurement tools is especially clear for research on the effects of socioeconomic status and the assessment of health policy. There is also a need for more gender-based data to assess the delivery system and to understand the variations of adequacy of delivery within health plans in various geographic areas. To the extent possible, it would be valuable to have data at the level of medical providers, perhaps through more extensive use of electronic medical records.
- The fragmentation in the health care system has significant consequences for women: for example, pregnancy-related care needs to be integrated with consideration of the effects on cardiovascular care.
- For all research on health, an integrated approach over the life span would provide important information.
- Two topics of special importance are the effects of caregiving and the effects of trauma on women’s health needs.
- Understanding the roles of education, socioeconomic status, employment, and the social context on women’s health requires interdisciplinary research and interdisciplinary training.
In addition to these themes that were discussed by many workshop presenters and participants, Salganicoff noted three other topics that she said emerged from those presentations and discussions:
- It is important to assess the impact of public policies on health. Research is needed on understanding both the intended and unintended consequences of policies, many of which tend to have a disproportionately negative impact on women.
- There is a need for an investment in the development and evaluation of effective interventions that consider the biological differences between men and women with respect to manifestation of disease and men’s and women’s responses to treatment.
- The health professions need to improve the means of communication about the role of gender and health. It is important to communicate the challenges to women’s health that have been discussed in this workshop to policy makers, clinicians, and researchers so there will be a sense of what will stimulate action and change.
The lively floor discussion addressed these and other issues mentioned during the workshop. A major theme that emerged from the discussion was the need to develop a research agenda with a cross-sector multilevel approach—one that takes a life-course perspective. Many participants said that it is important to recognize that health problems early
in women’s lives can set trajectories that may be difficult to change later in their lives.
Several participants noted that the movement toward precision medicine raises important questions that need to be addressed in research on women’s health. The key question—which pertains to both men and women—is how to integrate precision medicine with population health. It was suggested that the research community needs to incorporate gender in precision-medicine development activities, not using gender as a control variable, but seeking to understand the main effects and interaction effects of gender.
Salganicoff noted again the need for accessible data on gender differences so that they will be published in journals. A challenge is to seek creative ways of expanding gender-based analyses and the utility of existing data.
A participant emphasized the problem of the vulnerability of low-income, poorly educated women. Although health problems are growing for white women, the levels of mortality for African American, Latino, and Native American women need special attention. These issues may be driving part of the U.S. health disparity vis-a-vis other high-income countries. This concern was seconded by another participant who suggested that for low-income, poorly educated women, trauma might play a role. The causation is not straightforward since young men also have a lot of trauma in the United States. Perhaps the issue is that women internalize trauma differently, the participant said.
The participant went on to observe that the profession is beginning to understand the serious long-term consequences of trauma, and it goes beyond drug use and depression. Chronic disease also appears to be related. Another participant added that stress, which is less severe than trauma but more pervasive, may also play a role. The participant noted that the National Institute on Aging is supporting a research network to come up with a “gold standard” measure of stress that might help advance this work.
Another participant cautioned that the need to do integrated research that cuts across domains is at variance with the funding strategies of research funders and other sources of support. It is important that academics develop intriguing study designs and recommendations about how to do the research, but there is a need to educate different audiences as well. First, there is a need to alert women to the existence of this problem. More to the point, the participant said, journal editors and funding entities need to be educated that, first of all, there is a problem. Second, there is a need to develop new models for doing research that pull together datasets across domains that may fall outside, for example, agencies of the U.S. Department of Health and Human Ser-
vices (HHS) or may fall outside of the funding priorities of a particular foundation.
Following up, a participant expressed pleasure that the Office of Research on Women’s Health at the National Institutes of Health (NIH) had encouraged and supported this meeting but noted that other HHS research and funding agencies are not participating in this workshop. She mentioned the critical role of the Agency for Healthcare Research and Quality (AHRQ) in terms of supporting health services and health policy research. She suggested that this workshop report should be shared so it can inform the research agenda of other agencies.
A participant representing the Health Resources and Services Administration (HRSA) commented that it has been helpful to have participated in this workshop. The HRSA Bureau of Primary Heath Care funds federally qualified health centers across the country and serves 22 million patients across the country. Some of the HRSA uniform data system measures, which are similar to measures in the Healthcare Effectiveness Data and Information Set, include early entry to prenatal care, tobacco cancer screening, and low birth weight, so many pertinent data points important to women’s health are measured.
Another participant said, however, that there are still improvements to be made by HRSA. For example, the HRSA reports on cardiovascular interventions and treatments are not stratified by gender. There is also a need for a report that presents how the community health centers are serving women on a broad range of issues, not just the ones that are traditionally women’s issues, such as maternal and child health, dental care, mental health. That information needs to be made publicly available, the participant said.
Another representative of HRSA proposed that the information about health services needs to be presented at the systems level, not just by an individual location. If there is going to be change in the delivery as well as the empowerment of women with their health care providers, it has to be on a systems level. The data also need to identify and understand intersections. For example, one of the most promising areas of current research is the intersection of violence and HIV. Results are showing the intersection is bidirectional. The national HIV/AIDS strategy now includes women, as an integrated issue, the participant said.
A representative of AHRQ informed the workshop participants that the agency will publish a chartbook based on the National Healthcare Quality Disparities Report.1 The chartbook will present a wealth of data comparing men and women and note which indicators are showing better
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1For a description of this report, see http://www.ahrq.gov/research/findings/nhqrdr/nhqdr14/index.html [February 2016].
health, which are showing no change, and which are showing worsening health. She also reported that HHS is required, as a result of the Affordable Care Act, to issue a biannual report on women’s health activities across the department. She reminded the participants that government agencies are not permitted to play an advocacy role.
Another participant supported international comparisons as a means of understanding the health of women in the United States. Such comparisons would require an agenda of comparative research that includes people from other nations and women from other nations. One unique resource would be to tap into the huge immigrant group in this country. The participant suggested that an international perspective is especially important today because the United Nations is approving new millennium development goals that address gender equity and are related to women.
Following up on this point, another participant pointed out that the United Nations could be helpful. The United Nations often calls for nation reports on how the international treaties are being implemented in different countries and perhaps women’s health would be an appropriate topic. Data collected in response to a U.N. call could be organized in a critical way.
The need for improved methodologies for understanding health and mortality was raised by a participant. There is a need for a portfolio of measures that would be followed systematically over time to allow focus on how mortality interacts with morbidity and disability. With this approach, for example, knowledge could be gained about the expected length of life with such conditions as cardiovascular disease or having difficulties in the activities of daily life. Monitoring would need to be continuous so a trend could be identified early enough to become the subject of research and analysis, the participant said.
This approach might be difficult to fund, a participant pointed out, but a long-term measurement approach is critically important. Some health effects operate on a trajectory, such as the latent effects of tobacco use, for which there appears to be a resting period before the effects appear. Another example is the trajectory of opioid use and HIV and AIDS. The process seems to be to move from opioids to injectable drugs and then to the onset of hepatitis and HIV. These trajectories have huge consequences for women’s health. The participant said that preventive health approaches could focus on interrupting these trajectories. These approaches need methodological research that is designed to capture the richness of the variables that are affecting morbidity and mortality, a participant noted. When thinking about morbidity and mortality, the quality of women’s life is a dependent variable.
The foregoing discussion suggests the need for a strategic plan, a participant observed. A research portfolio to address these issues would
focus on expanded methodologies, use of multilevel analyses and have the capability of integrating data across domains. The strategy would consolidate different research strategies from different disciplines. It would include a focus on ethnography and a more longitudinal study of populations who are underserved because they have limited access to health care.
Such a strategic plan would have both long-term goals and short-term objectives, he added. One such short-term objective would be an annual report card on women’s health that was a year-to-year surveillance of status and progress, with line graphs showing temporal trends to highlight the findings. The report card could incorporate measures of health by socioeconomic status and race and ethnicity.
A participant representing the March of Dimes reported that the organization had been successful in raising the profile of preterm birth with annual report cards. The report cards help translate research for advocacy purposes. Organizations that are not constrained from advocacy can use the report card information to advocate for women and children’s health and advocate for funding from the relevant agencies.
The HHS annual report to the nation on cancer is another example, a participant noted. The report was prepared in a partnership among two federal surveillance agencies—the American Cancer Society and the National Association of Cancer Registries. The HHS Office on Women’s Health could profitably consider an annual report in conjunction with outside partners.
Terri Cornelison, deputy director of NIH’s Office of Research on Women’s Health, expressed appreciation to the workshop organizers, presenters, and participants and summarized the accomplishments for the day. One objective of the workshop was to highlight a challenge—understanding the implications of a report that documented, in stark and compelling terms, that the health of U.S. women is significantly worse than the health of women in 16 peer countries (see Chapter 1). The workshop reached across sectors, disciplines, and areas of expertise to highlight what is known and what needs to be known. It served to identify key factors at the system, federal, state, patient, and provider levels that might explain the comparative deficiency of the health of women in the United States.
Cornelison said that the workshop identified key research areas to decrease mortality and morbidity, for both the short and long term. It also identified some areas in which small interventions that are relatively inexpensive could have large effects. The challenge now, she suggested, is
to communicate, educate, disseminate information to journal editors and colleagues and get the word to all women in the United States. When the health of women in the United States improves, the health of the United States improves.
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