Moving Lesbian Health Research into the Mainstream

Today, most studies that look at health concerns routinely identify racial, cultural and ethnic groups to advance health disparities research. At least one societal group, however, remains largely unstudied. “Despite phenomenal work by a cadre of people who have done isolated studies on the lesbian/gay/bisexual/transgender (LGBT) community – and the fact that in California, we make up approximately the same percentage of the population as African Americans – LGBT people are not identified in the larger studies,” says Diane Sabin, DC, executive director of the Lesbian Health & Research Center (LHRC) at UCSF. Sabin believes that a pilot program the LHRC is undertaking in conjunction with the UCSF Institute for Health & Aging (IHA) will be the first significant step in addressing that concern – and that the stakes are high. “In some sense, we’re fighting for our lives,” she says. “We’re hoping that we won’t have another epidemic like AIDS before we have a deeper understanding of LGBT health needs.”

Ongoing Collaboration

The LHRC’s mission is “to enhance clinical practice and inform policy about the health care needs of and delivery of services to lesbians, bisexual women, and transgender individuals through a program of research, postgraduate education and training, and public service.” An ongoing collaboration between the UCSF schools of nursing and medicine, the LHRC was founded by faculty emerita Suzanne Dibble, RN, DNS, and Dixie Horning, executive director of the UCSF National Center of Excellence in Women’s Health. Dibble and Patricia Robertson, MD, from the School of Medicine served as founding co-directors from 1999 to 2007. Since its inception, the LHRC has been located within the IHA, which has provided an intellectual and physical home, as well as administrative support. That longstanding relationship is at least a partial explanation for how the leaders of the LHRC were able to conceive of what they knew would be a bold experiment. It began as a discussion on how best to expand and implement the research piece of their mission, during which they realized they had not yet made the most of a unique opportunity. “UCSF is a world-renowned research institution,” says Sabin. “You name the western pathology and it’s being studied here. We know lesbians are in those studies, but since we’re not identified as such, our community cannot benefit from the research findings, and we felt that had to change.” In the fall of 2007, LHRC leadership made a proposal to researchers at the IHA: Would the IHA researchers be willing to partner with the LHRC to develop and insert tested questions about sexual orientation and gender identity into their studies? Such questions would enable researchers to identify LGBT participants and to assess any potential differences between them and the other groups traditionally identified in health research. “We received a resounding ‘yes’ from the faculty,” says Sabin. “And the outpouring of support reminded me of one of the deep joys of working at UCSF. The people at IHA and beyond – School of Nursing Dean Kathy Dracup, Vice Dean Nancy Milliken at the School of Medicine, Co-Directors of the Institute for Health & Aging Wendy Max and Pat Fox, and School of Nursing Associate Dean [and LHRC Co-Director] Zina Mirsky – really are the unsung heroes and heroines of the work we do here.” Sabin calls the project “bold and ambitious, precedent-setting and necessary.” She hopes that it will lead to support for inclusion of LGBT questions in all UCSF research – and ultimately in all research, period. “If the administration could encourage everyone to routinely include these questions, it would make an enormous difference,” she says.

Discovering Differences

But what kind of difference would it make? Sabin acknowledges that there are those who wonder why a lesbian’s health issues would be any different than those of a heterosexual woman. The answer begins with the fact that existing research in this emerging field has indicated differences in areas that include access to health care without fear of stigmatization, access to abortion and family planning, substance abuse, depression and anxiety disorders, stress and family acceptance, sexually transmitted diseases, body mass index education and transgender health-related issues. Consider the process of taking a proper history, perhaps the most critical piece of a medical diagnosis. “If a patient feels unwelcome in the provider’s office – intimidated by intake forms or ill at ease with the provider’s attitude, questions or demeanor – the history can be compromised,” says Sabin. Even in the most welcoming provider’s office, a lack of insight or information about certain cultural norms, biological differences or psychosocial factors can make it difficult for the provider to ask the right questions in the right way. It is not unusual for LGBT patients to report such barriers, and the literature has confirmed and documented this experience. More to the point, however, “LGBT individuals are so underserved and understudied with regard to health, it’s impossible to know what we don’t know until we make a concerted effort to discover, confirm and understand the differences,” says Sabin. “Let’s consider this matter from a historical perspective,” she continues. “Until 1990 and the release of the Nurses’ Study [which looked at more than 80,000 women over 30 years], women were viewed as small men. That study established that a woman’s health is different from a man’s and caused a true shift in consciousness. “Now it’s possible the results and differences from our pilot won’t be that interesting, but they also might be dramatic and important. And it’s my fervent hope that this is the beginning of a process that will get us to where we can look back and say, ‘Wasn’t it amazing that we weren’t identified in studies at an earlier date?’” The LHRC has a number of projects running simultaneously to create templates that specifically address the improvement of LGBT health. Among them: creating a national think tank to focus on the issues of LGBT health, serving as a core collaborator for the newly formed California LGBT Health Coalition, providing culturally appropriate training for providers and working on community-based projects. Further, it is conducting research in the field of resiliency to explore two essential questions: 1) Why, in the face of so many obstacles, do so many lesbians manage not only to function but to thrive? and 2) Are there factors that can be identified and shared with the LGBT community as well as other underserved, minority and oppressed population groups?