 |
 |
 |
|
 |
|
|
|
         |
|
|
|
|
|
|
|
| navigate: home: magazine: fall 2000: article | |
|
Empowering women through educational outreach in women’s health By Celena E. Kusch | ||||||
|
For centuries, women’s health has been a medical paradox — simultaneously the site of great discoveries in the fundamentals of medical science and an area of dramatically underdeveloped research into the effects of gender in medicine. In 1809, for example, Jane Todd Crawford became the first person treated with abdominal surgery. Without the use of anesthesia or antisepsis, Dr. Ephraim McDowell removed a 22-pound ovarian tumor from her abdominal cavity. Crawford not only survived the surgery, but lived another 33 years, dying at age 79. Nonetheless, more than 50 percent of the women today who have ovarian cancer still die within five years of diagnosis. Although many medical breakthroughs have been discovered through work with female patients, it was not until the National Institutes of Health (NIH) Revitalization Act of 1993 that the necessary inclusion of women and minorities in all U.S. clinical trials began to carry the weight of law. A recent study conducted by Dr. Joanna Cain, director of the Department of Obstetrics and Gynecology at Penn State’s College of Medicine at The Milton S. Hershey Medical Center, reveals that research models continue to place an undue burden on women. In her analysis of the participation of reproductive-age women in clinical trials, Cain found that 42 percent of trials restricted their access without any medical grounds. By contrast, hardly any studies recommended that men use contraception during their participation in the trials. Exposing such inconsistencies, Cain argues, is part of the advocacy role of the University. “Universities have a fundamental obligation to discover new knowledge and to be sure that the research we conduct is appropriate,” she added. “We have a responsibility not just to design research but to ask questions about what barriers we place in front of research. We need to identify those barriers so that we can always do better.” That responsibility has definite implications for the way Cain approaches the teaching, research and service missions of her department. In all areas, outreach forms of scholarship have been part of her strategy for improving the state of women’s health throughout the Commonwealth and beyond. She often looks to the community to identify which scholarly questions should be asked. “At the Hershey Medical Center, we do a lot of research on areas that we see are underserved. One extremely neglected area is rural women’s health, where the barriers to care are very different — everything from difficulties in access to unique exposures to pesticides. A number of colleges and units throughout the University are working on collaborations in this area,” Cain noted. “The environmental effect in cancer, which really has an impact here in Pennsylvania, is another example of a significant area of women’s health that is essentially untouched, and we are just beginning to find answers,” she continued. “I would like to continue to see Penn State expand research dramatically in these areas. Then, the second role of the University is in taking the information we find through that research and translating it into a form that women can use to make decisions about their health and the health of their families. We take the responsibility of having this knowledge shared with women themselves very seriously.” Based in her philosophy of responsibility, Cain has sought community input to determine the best ways to ensure that women have the information they need. Four years ago, Cain began a series of community focus groups comprised of women of all ages to guide the planning of the Penn State Women’s Health Center and to identify other needs and gaps in services and information. Lynn Neely, president of the Friends of Women’s Health, explained the impact of the initial community focus groups, noting, “When Dr. Joanna Cain arrived in Hershey, she not only met with her professional contemporaries but, more importantly, with women in the area who are involved in businesses, the arts, nonprofit agencies and other community activities. Joanna was keenly interested in hearing about the issues of existing health care in the community, as well as the expectations of health care from this broad group of individuals. Using the input of these women and men of the community as a base, she developed the Penn State Women’s Health Center environment.” The College of Medicine opened the Penn State Women’s Health Center in Hershey in 1998. Approximately 38,000 women and families receive services each year through the Hershey location alone. The center also coordinates with multiple satellite sites to provide easily accessible clinical care to women throughout the region. In addition, the center offers a range of expertise from health professionals with unique specialties within obstetrics and gynecology, as well as programs that are shared with internal medicine, pediatrics, counseling, exercise physiology and nutrition. This new model of interdisciplinary collaboration is designed to improve care by breaking down disciplinary barriers to better reflect the diversity of women’s health needs. Dr. Luanne E. Thorndyke, assistant dean for continuing medical education and associate professor of clinical medicine, praised the initiative, saying, “A unique and important aspect of the building project for the Penn State Women’s Health Center was the linkage with community groups in the design and construction of the building. A linkage with community senior citizens resulted in the addition of a wing to the building for a community senior center. Under the leadership and guidance of Dr. Cain, the Penn State Women’s Health Center has been created, and it serves as a focal point for many outreach activities.” Remarkably, the center has become just one of a long list of accomplishments in University outreach spawned by community input. According to Cain, the women in the community offered such a wealth of information about unmet needs that she and her colleagues are still acting upon their feedback. One of the first outcomes of those focus groups was the creation of the Friends of Women’s Health organization, a group of civic-minded individuals from throughout the greater Harrisburg area who have joined forces to provide resources in health care information. “There was such an interest in increasing access and programs for women that it became clear that the women in the community wanted to act to improve their health resources and health care,” Cain explained. “We owe a great deal to the leadership of Dr. Ruth Leventhal, former provost and dean of Penn State Harrisburg, in identifying people within the community who wanted this kind of initiative and saw the need for it.” The Friends of Women’s Health group contributes extensively to the many health education needs of individuals and families in the Central Pennsylvania area. Recently, the community awarded Cain the Open Stage Award for Women Who Care in recognition of her accomplishments in establishing the group. Their work has become a driving force within the region, and their efforts help to fund and support many other outreach programs by the College of Medicine and Penn State Women’s Health Center faculty and staff. These programs include a regional community health library, a Women’s Health Education Institute, a Perinatal Bereavement Program, the Women’s Health: Ages and Stages program, Her Heart’s Wish and the As A Woman newsletter (please see story). Community Health Information Library
Housed in the building with the Penn State Women’s Health Center, the Community Health Information Library offers users access to high-quality accurate information about a variety of health issues. The library contains major collections of books, journals and other resources and is staffed by a medical librarian and volunteers full time. The library reached 1,323 individuals directly, and many thousands more through support of public and school libraries, in its first year alone.
The library offers materials in a number of areas not conventionally thought of as “women’s health,” including health information about both genders and a broad range of ages. Like the interdisciplinary focus of the Penn State Women’s Health Center itself, Cain added, the library’s breadth of information more accurately reflects women’s needs. She believes that effectively reaching the women in the community means reaching their families, as well.
“The programs of the community health library recognize the role of women as decision makers for the whole family,” she said. “They decide which drug to take, which treatment option to use. We can provide them with the correct information that is often very difficult for them to find. With the resources we provide through the library and other programs, we really are recognizing women’s important roles in health care.” Women’s Health Education Institute
Another innovative program, the Women’s Health Education Institute, offers a variety of community health education programs and support groups designed to disseminate and apply health information, including the latest discoveries from the Penn State Medical Center.
“The Education Institute extends the impact of the outreach activities deep into the community and reaches diverse audiences that are not necessarily a part of the patient population,” Thorndyke commented.
Started in May 1998, institute offerings in many locations now reach more than 200 people each month. Dr. Norma Leslie, assistant professor of obstetrics and gynecology, serves as the institute’s director.
For institute faculty, flexibility seems to be the key to success. Programs are designed in a number of different formal and informal delivery models, including support groups, clinics, workshops, seminars, discussion groups and hands-on classes. Topics reflect the issues facing women of various ages and range from pregnancy and parenting clinics for adolescents to seminars and luncheon lectures on health issues for women over 40, senior health matters and midlife transitions. Although many programs grow out of the Women’s Health Center’s expertise and experiences in the areas of women’s health, institute offerings also take an interdisciplinary and holistic approach to women’s needs for health information. Examples include diabetes management through meal planning, stress management, assertiveness skills, parent-adolescent communication and investing for the future, as well as customized on-site programs available throughout the state.
In addition, the institute hosts a unique celebration of women’s health through educational outreach during Women’s Health Week each year. Running the entire week before Mother’s Day, this year’s Women’s Health Week events for community women attracted more than 1,000 participants.
Cain is particularly proud of the Women’s Health Education Institute offerings — such as the programs for individuals considering adoption and support networks for pregnant teens — that demonstrate a new approach to health education. She cites these examples as areas where health professionals have extensive knowledge, but individuals often do not have sufficient support to find and use that information successfully.
“There are areas of health care and health information that nobody is looking at,” she noted. “The best thing we can do is to leap into places where other people are not already providing services. This ranges from improving the outcomes of rural teen pregnancies to whole information sets that women don’t have access to — in the areas of adoption, for instance. We do not want to reproduce things that others are doing well, but because the University has a depth of knowledge and a breadth of interdisciplinary connections, we can begin to fill in those gaps.” Perinatal Bereavement Program
Like the pre-adoption courses and support groups, programs for families who experience loss during pregnancy grew out of community interest. For years, Hershey Medical Center nurses and health professionals had recognized the need to provide support for families who suffer miscarriage, ectopic pregnancy or stillbirth, but lack of funding prevented progress in developing a program. According to Joni McGrady, attending nurse and bereavement coordinator in the Division of Women’s Health, Cain’s arrival gave the project the push it needed.
“With her guidance and support, Hershey Medical Center now has an organized Perinatal Bereavement Program including approximately 15 trained bereavement counselors in the Division of Women’s Health. These counselors follow families throughout their pregnancy, at the time of the death of their infant and a year or longer, depending on individual needs,” McGrady said.
Along with counseling, families may enroll in an Infant Loss Support Group or a Perinatal Interment Program, which offers families who experience infant death the option of a free burial and graveside memorial service at a community monument and burial site. Women’s Health: Ages and Stages Community involvement in women’s health outreach is also evident in the Ages and Stages conference series for health professionals. Over the years, the conferences have served as a meeting point for medical students, Hershey Medical Center faculty and staff, service providers, health professionals, policy makers and members of the community. Medical student presentations of educational poster sessions and risk assessment and screening services have helped participants become more aware of such women’s health issues as cardiovascular disease and osteoporosis. Administered through Thorndyke’s Office of Continuing Medical Education, Ages and Stages has increasingly become a focal point for outreach scholarship and public service in the region. Her Heart’s Wish
Clearly, University–community partnerships are at the heart of the outreach activities of the Division of Women’s Health. Her Heart’s Wish is perhaps the best example of that collaboration. Designed as a wish fulfillment foundation for women suffering from cancer, Her Heart’s Wish is a model of University responsiveness and community engagement.
“Like a lot of things that we do, the program is really a community effort,” Cain said. “Our role is in getting the project started, like planting a grain of sand in an oyster shell to make a pearl, but the program belongs to the community.
“This is all part of the Hershey Medical Center’s commitment to filling in gaps in care,” she continued. “It was one of our patients who allowed us to see the need for this kind of organization. There were no gift programs for women dying of cancer. We provided the home and stimulus to get it going, but the goal is for the community to take over the project as we will grant wishes to women no matter where they are receiving care.”
Recently, the organization appointed Shelley Kunkle, a Harrisburg attorney, as chair of the board, and plans are to expand the program’s reach and impact. Future outreach
The continued growth of outreach efforts ranks high on Cain’s list of priorities for the future. Her vision is to increase the geographic span of the programs and to expand the use of the community health library. Citing funding as the greatest barrier to University outreach, Cain has begun a community-based campaign to raise $1 million for further outreach efforts.
Other plans also include enhancing use of the World Wide Web to disseminate research and improve the quality of medical education statewide. Currently, she is spearheading a trial of Internet-based standardized lectures that will enable educators throughout the state to provide the same information to their students. According to Cain, distance learning is an area of great interest for the future. Research implications
Cain’s focus on outreach teaching and outreach service have also led to new research pursuits.
“The greatest impact of these outreach activities on my research has been in coming to understand how little we know about rural women’s health,” Cain reflected. “Almost any question I could ask in that area has no answer. Should we mail health information to increase awareness? We don’t know. It may be more important that your sister tells you about risk factors than that you receive a letter in the mail. My work with the Penn State Women’s Heath Center has shifted my research interests to incorporate these broader questions about information delivery and research design.”
Already Cain has been awarded a grant from the Heinz Foundation to assess how rural women get their health information. Ann Ward, project manager for the Northern Appalachia Leadership Initiative on Cancer (NALIC), and her colleagues are carrying out this research in conjunction with the local, informal networks for health information that NALIC is building to overcome barriers that prevent people from participating in early detection programs, getting adequate treatment and participating in clinical trials. Administered by the College of Agricultural Sciences, the project draws on the expertise of faculty and staff from the colleges of Agricultural Sciences and Medicine, as well as Penn State Cooperative Extension, to forge links from rural communities to high-quality cancer education programs and research.
“We are interested not just in finding ways to get information to women but in finding which vehicles are most effective for taking the next steps,” Cain added.
Her own next steps will be to pose these questions nationally as she advances the education of the next generation of doctors and nurses. Recently appointed president of the Association of Professors of Gynecology and Obstetrics, a national medical organization devoted to medical education in academic and teaching institutions, Cain emphasizes the value of education, saying, “Clearly, teaching students to think about women’s health is an important part of what we need to do. It’s a legacy — it’s not just what we do with a student or resident today, but how they provide care for women 10 years from now. Outreach is a major part of how we ensure that education reaches everyone. Education is a form of immortality, and the immortality we achieve in educating women in the community results in better choices they can make for their own families.” | |||||
| ||||||
© 2002 Outreach Communications, Outreach & Cooperative Extension, The Pennsylvania State University phone: (814) 865-8108, fax: (814) 863-2765, e-mail: outreachnews@outreach.psu.edu |
||||||
