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UW’s Nurse Scientists by Tara Hayes Constant Photo by Ingrid Pape-Sheldon

In the early 1970s Nancy Woods was working as a nurse on a neurological unit when she met a patient who would influence the rest of her career. “I cared for her for about six months; she was very, very sick,” she says. The woman was admitted to the hospital, and nearly died, after being beaten by her husband. During the length of her stay the police called repeatedly, checking whether she was still living so they would know what charges to bring. In the end she survived, only to be sent back to her abuser. “I still remember watching her being pushed out of the hospital by her husband,” says Woods, “and thinking, ‘What have we done?’”

For Woods it was a blatant example of how gender and social context directly affect health. At the time she could only watch in frustration, but the experience was one that made her question how women’s health was understood and viewed by the medical community and by society in general. More than a decade later, Woods founded a research center aimed at understanding that very thing — how being a woman influences your health.

In 1989 Woods, who by then had earned a doctorate in epidemiology and was on the University of Washington faculty, cofounded the Center for Women’s Health — now the Center for Women’s Health and Gender Research (CWHGR) — within the University of Washington School of Nursing. It was the first such center funded by the National Institutes of Health (NIH). This year CWHGR lost its national funding, but its twenty-year history tracks an evolving understanding of gender and women’s health.

Three longtime collaborators at CWHGR sat down recently to discuss the institution and its evolution. The varying research interests of these nurse scientists illustrate the complexity and scope of the center: Woods is now a professor in the Department of Family and Child Nursing and recently completed a 15-year study on how women experience transitioning through menopause; Dr. Margaret Heitkemper, the current director of CWHGR, focuses on gastrointestinal health and established the center’s laboratories; and Dr. Carol Landis is an expert on sleep disorders and disturbances.

The image of nursing many people have might bring to mind brightly colored scrubs and a pair of caring hands rather than laboratories and nationally funded research, but the UW School of Nursing has both. Scientists use their perspective as trained nurses to inform their approach as researchers. Instead of caring for individuals in a clinical setting, these nurse scientists are working on projects that provide a broader knowledge base to help guide nursing practices.

Over the last twenty years the CWHGR has brought together nursing scientists with different backgrounds, interests and approaches, and united them with a common focus on women and the various biological, social and cultural factors that influence their health. Studies coordinated through the center are wide-ranging and interdisciplinary, and have included such topics as the efficacy of treatments for hot flashes, what determines whether a woman will disclose her HIV-positive status, the relevance of culture in programs to promote physical activity, the effect of sleep loss and gender on immune function, and end-of-life care.

Nursing, Woods points out, has always been a woman-dominated field. According to the most recent study by the U.S. Bureau of Labor Statistics, more than 92 percent of registered nurses are women. “Nursing as a profession and discipline has had a lot to contribute to women’s health over the years” says Woods, “I think we’ve been a little more attentive to issues that affect women’s health.”

At the time of the center’s founding there were a growing number of nurse practitioners focused on caring for women, and the University of Washington’s women’s health specialty drew many students. In turn, the increased interest in women-centered nursing practices highlighted the need for more gender-specific research.

Perhaps it is not surprising that the UW School of Nursing developed a specialty in, and a center focused on, women’s health. Women are disproportionately poor, says Woods; the disparity in income and benefits associated with employment means they don’t have the same access to health care as men. And historically, many women entering nursing school have come from lower socioeconomic backgrounds. “Our origins shape how we view the world,” says Woods.

Indeed, for many women, nursing has been the first step into higher education and research. That was the case for Landis. “I graduated from high school in 1962,” she says, “and at that point in time avenues for women were nursing and teaching.” Although she wanted to study biology and do research from a young age, she didn’t have the opportunity to attend college right out of high school. She attended Johns Hopkins School of Nursing instead. Three years later, with a nursing diploma in hand, Landis was in a position to support her own undergraduate studies, and beyond, all in nursing. “Nursing has provided an opportunity to move and advance in my career that I’m not sure would have been available in other avenues.”

Heitkemper got her taste for research while working as a nurse on a study about appetite regulation. “[In the field is] where you are exposed to science, you are exposed to research, you get excited about it,” she says. She went on to get a Ph.D. in physiology and biophysics.
If origins shape how we see the world, then they also shape what we make of it. What was happening at the University of Washington in women’s health had wider national implications. “One of the great outcomes that I think we can claim,” says Woods, “is that we helped influence the development of a national research agenda.”

Two years after the founding of the center, the NIH held a series of meetings to set the first-ever agenda for women’s health research. At the time few research studies had focused on women. “The truth of the matter was that there was probably not very good men’s health research either,” Woods notes. “It was sort of the assumption that gender didn’t matter. Now it is clear that gender does matter, and has to be considered when framing research questions.”

Nurse scientists have a tendency to focus on life contexts, like gender, within which a person experiences their health. “It’s not just about diseases as much as it is about the broader spectrum of human health,” says Woods. She cites some of her own early research of women with breast cancer as an example. In the 1970s breast cancers were often caught late and few women survived beyond five years. Studies at the time suggested that having a mastectomy had a large effect on a woman’s sexual identity.

Yet when Woods conducted a series of interviews with women who had had mastectomies, she found that not to be the case. “They’d say, ‘Oh yeah, that was an issue for about a week and then I got past it’.” Instead, “They wanted to know ‘Am I going to live long enough to see my child graduate from high school, get married, have children? Will I see the things that I aspire to have as part of my life?’” Woods found that research agendas were failing to resonate with real women’s lives.

What was lacking in early research turned out to be a strength in nursing-based research, says Woods, “It’s one of the few health professions that really is charged with caring for the human body as well as mental health, and our educational system is structured to help us look at people’s health in the context of everyday life, in the context of culture and society.” CWHGR’S program manager, Kendra Hayward, agrees. She finds nursing and nurses to have a holistic, patient-centric approach, and sees that translated into the way research is done.

In her own work as a researcher, Landis has observed that nurse scientists usually approach an issue with a qualitative assessment, often obtained through interviews or focus groups, much like Woods’ interviews with breast cancer survivors in the 1970s. Nursing scientists go to the patients first, not to theory, to understand the problem they’re addressing. Patient or participant self-reporting is one such method for gathering information.

Woods used this method in her Seattle Midlife Women’s Study by asking women in the study to chart their menopause symptoms in daily diaries. Now she has 15 years’ worth of detailed information from which to derive an understanding of how women experience menopause. In other words, for nursing scientists, health is not just about what can be measured with a thermometer or stethoscope, or even a biological marker like cholesterol. It’s also about how people feel about their health, what they have to say and what they care about in their own lives.

This approach also means that much of the research conducted through the center tends to be symptom-based, says Heitkemper. For example, her research into gastroenterology, specifically irritable bowel syndrome, looks at the symptoms people deal with, from diarrhea or constipation to the influence of the menstrual cycle. And Landis’ work in both sleep disruption and hot flashes are examples of symptom-based studies. Sleep problems are often a symptom of other health-related events and disease processes, and hot flashes are a symptom experienced by women during menopause, and by both men and women during treatment for cancer.

Women’s health was a hot topic in the 1990s. The National Institutes of Health, for instance, started the Women’s Health Initiative in 1991, a series of studies that were conducted over a 15-year period. Now, says Landis, “investigators are challenged to provide really good scientific justification for why a study is focused just on women or just on men,” because even in disorders that predominantly affect women, such as breast cancer, there’s a need to understand how they manifest in both sexes. The center’s name was changed in 2004 in recognition of the fact that many diseases affect both men and women, and both need to be included in studies.

Landis envisions national perspectives on women’s health as a swinging pendulum: At one end, women’s health was seen from the reproductive angle, then it passed through the financially well-funded ’90s and the view expanded to include other women’s health concerns. Now it has reached the other end with renewed attention on reproduction. In a nation where women delay childbearing to a later age, there is a lot of interest in extending the window for reproduction. For instance, says Landis, many investigators are now looking at the hormonal changes that occur in women in their mid to late thirties, and how those changes influence fertility. Indeed, most of the topics listed under Women’s Health on the NIH Web site have to do with reproduction. “Priorities change at the national level, and the sciences move forward,” says Heitkemper.

The Center for Women’s Health and Gender Research is feeling these changes. For much of its history CWHGR was funded by grants from the National Institute of Nursing Research and the National Institutes of Health. When CWHGR learned earlier this year that it would lose its federal funding — in the face of the university’s budget crisis, no less — the organization, and particularly Heitkemper, were faced with two choices: look for funding from another agency, or reframe their future work to fit within the federal agenda. Looking around they saw Carol Landis’ expertise in sleep as an area of strength, and one that fit well with a new initiative from the NIH. “One of the things we’ve noticed is that many of the problems or symptoms that we study, be it menopause, hot flashes or gut problems, is that many of the women have sleep problems,” says Heitkemper, “so we are actually moving to a more specialized focus in sleep.”

A new center within the School of Nursing will look at sleep issues across the life span and will include both genders, but maintain a particular emphasis on women, says Heitkemper. Throughout most areas of the world, sleep problems disproportionately affect women, Landis says. One upcoming study will look at couples and sleep. Most of the faculty and staff involved at the center will remain the same. The focus will shift, but they hope to translate some of the strengths of CWHGR, such as funding the pilot projects of junior researchers and fostering new research. Nonetheless, says Heitkemper, “We are all concerned that women’s health stays at the front of the [NIH] program announcements that come out.”

If there is any question that funding for women’s health is still relevant, one need only look to the surprising findings for the NIH’s Women’s Health Initiative. In 2002, when the results from that study were released, Woods was working on the development of a Web-based decision aid to help women manage the symptoms of menopause, including whether to use hormone replacement therapy (HRT). It turned out to be a timely project when the WHI announced its finding that hormone replacement therapy could actually increase a woman’s risks of heart disease and breast cancer.

Earlier studies had used retrospective data that biased the result, and in fact had falsely indicated that risk for heart disease decreased when women used HRT. The clinical studies by WHI reversed those findings. It was an example of how a well-funded study could change women’s approaches to their health.

While the plans for a new sleep center in the School of Nursing are moving forward, all three professors are holding out hope that other funding sources will step forward to preserve the CWHGR. “We have made a good deal of progress in studying midlife women’s health, the first area of emphasis of our center, but we still have a long list of unanswered questions,” says Woods We are only beginning to understand the wide-reaching influence of the X chromosome as well as other sex and gender differences. We are just getting started.”

Tara Hayes Constant is a freelance writer and frequent contributor to Seattle Woman. She is also a graduate student in biocultural anthropology at the University of Washington.

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