5
Conclusions and Recommendations

The following conclusions, recommendations, and research priorities are based on the workshop presentations, the testimony submitted to the committee, a review of the relevant literature, and the committee's discussion of the issues. The key points underlying the recommendations and research priorities are outlined here; more detailed supporting information can be found in the preceding chapters.

Conclusions

The committee reached three major conclusions:

Conclusion 1: Additional data are required to determine if lesbians may be at higher risk for certain health problems. Further research is needed to determine the absolute and relative magnitudes of such risk and to better understand the risk and protective factors that influence lesbian health.

Conclusion 2: There are significant barriers to conducting research on lesbian health, including lack of funding, which have limited the development of more sophisticated studies, data analyses, and the publication of results.



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--> 5 Conclusions and Recommendations The following conclusions, recommendations, and research priorities are based on the workshop presentations, the testimony submitted to the committee, a review of the relevant literature, and the committee's discussion of the issues. The key points underlying the recommendations and research priorities are outlined here; more detailed supporting information can be found in the preceding chapters. Conclusions The committee reached three major conclusions: Conclusion 1: Additional data are required to determine if lesbians may be at higher risk for certain health problems. Further research is needed to determine the absolute and relative magnitudes of such risk and to better understand the risk and protective factors that influence lesbian health. Conclusion 2: There are significant barriers to conducting research on lesbian health, including lack of funding, which have limited the development of more sophisticated studies, data analyses, and the publication of results.

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--> Conclusion 3: Research on lesbian health, especially the development of more sophisticated methodologies to conduct such research, will help advance scientific knowledge that is also of benefit to other population subgroups, including rare or hard-to-identify population subgroups and women in general. The committee identified numerous areas where additional research is needed either to better understand lesbian health or to improve the methods used to study lesbians and their health. Priority areas for research are the following: Research Priority 1: Research is needed to better understand the physical and mental health status of lesbians and to determine whether there are health problems for which lesbians are at higher risk as well as conditions for which protective factors operate to reduce their health risk. There has been much speculation about health risks of lesbians, and there is some evidence that lesbians may be at heightened risk for some problems. There are, however, large data gaps in the knowledge about lesbian health, and the population-based data needed to determine the relative health risks of this population are not available. It is critical that such research consider the socioeconomic and cultural contexts in which lesbians live and the impact of these factors on their health. Risk factors that influence the health of lesbians across the life span include negative attitudes and stigma toward them, barriers in access to health care, socio-economic factors, various legal factors including the fact that engaging in lesbian sexual behavior is illegal in some states, and the stresses associated with all of these factors. However, little is known about the specific impact of these risk factors on lesbian health and even less about any unique protective factors and how they may operate. Research Priority 2: Research is needed to better understand how to define sexual orientation in general and lesbian sexual orientation in particular and to better understand the diversity of the lesbian population. Definitions of lesbian samples in research studies have varied widely

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--> along the multiple dimensions of sexual orientation: sexual identity, sexual behavior, and attraction or desire. Only in some cases are definitions conceptualized based on the goals of a particular study. Population-based data are needed to better understand these dimensions of sexual orientation and the interrelationships among them. Lesbians are a very diverse group, varying along dimensions of sexual orientation and in terms of demographic characteristics such as socioeconomic status, race and ethnicity, culture, religious background, and age. Population-based "baseline" studies are needed to better understand the characteristics of the population and how these characteristics interrelate with health status. Studies are especially needed to better understand the developmental course of lesbians across the life span. In particular, research is needed on the impact of stigma on lesbians across the life span, especially among different racial and ethnic groups and a range of socioeconomic classes. International and cross-cultural studies may also be helpful for increasing understanding of the interrelationships among these factors and their impact on lesbian health. Because the field of lesbian health research is still relatively undeveloped, studies are needed that use qualitative research methods, such as ethnographies and focus groups, to increase understanding of the diversity and distinct subgroupings and behaviors of the population. Research Priority 3: Research is needed to identify possible barriers to access to mental and physical health care services for lesbians and ways to increase their access to these services. It is commonly believed in the lesbian community that lesbians fail to access traditional health services at the same levels as other women, although population-based data are not available to determine the degree to which this problem exists. Nonetheless, the committee did identify a number of barriers to access to mental and physical health care services for lesbians. These include structural barriers, such as the potential impact of managed care and the lack of legal recognition of relationship partners; financial barriers, which have an impact on access to health insurance coverage; and personal and cultural barriers, including attitudes of health care providers and the lack of cultural competency among providers for

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--> addressing the needs of lesbian clients. Increased understanding of the barriers to health care for lesbians can provide useful information for understanding and improving access for other underserved groups as well. In addition to the general conclusions and research priorities, the committee makes eight recommendations for improving the knowledge base on lesbian health. Recommendations Recommendation 1: Public and private funding to support research on lesbian health needs to be increased in order to enhance knowledge about risks to health and protective factors, to improve methodologies for gathering information about lesbian health, to increase understanding of the diversity of the lesbian population, and to improve lesbians' access to mental and physical health care services. A long-term federal funding commitment to lesbian health research is needed that is responsive to the ongoing needs of the lesbian population. Foundations and other government entities are also urged to fund research on lesbian health. Recommendation 2: Methodological research needs to be funded and conducted to improve measurement of the various dimensions of lesbian sexual orientation. Methodological research is needed to improve and refine the methods available to study lesbian health. The committee recommends that methodological research be funded and conducted to improve measurement of the various dimensions of lesbian orientation: identity, behavior, and attraction, including women of different racial and ethnic groups, social classes, ages and birth cohorts, religious backgrounds, and geographical areas. Although existing questions on surveys are adequate for many research purposes, further work is needed to assess and improve their validity. Methodological research is also needed on the feasibility of using

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--> different sampling techniques, by themselves or in combination, for rare or hard-to-identify populations, to obtain a probability sample of the lesbian population. Funding is also needed for start-up studies on lesbian health, supplements to ongoing studies to include and analyze responses to questions regarding lesbian health, secondary analyses of existing data, and conferences focusing on methodological and ethical issues in lesbian health research. Furthermore, the committee takes note of the fact that a disproportionate amount of work in this area has focused on lesbians with ties to lesbian community organizations and events. An unknown, but possibly sizable, number of lesbians do not have such ties to organizations and so are routinely missed in such studies. Thus, research is needed to determine whether question wording and other techniques have to be changed to improve accurate disclosure among other social groups of lesbians. Efforts to measure reporting error should include standard quantitative and qualitative techniques, as well as techniques developed especially for this purpose. The use of ethnographic techniques to ascertain limits to validity may be especially useful. Research should be funded and conducted to determine the best ways to ask questions about lesbian orientation, including the use of alternative wording and innovative technologies so as to obtain maximum disclosure. Such research should assess and measure the extent to which wordings appropriate for certain social groupings (e.g., women of specific racial or ethnic groups, social class, or regional groups) may be less appropriate for other groupings. This will allow investigators to minimize underreporting of lesbian status and also minimize biased estimates of the proportion of lesbians in different social groups. Recommendation 3: Researchers should routinely consider including questions about sexual orientation on data collection forms in relevant studies in the behavioral and biomedical sciences to capture the full range of female experience and to increase knowledge about associations between sexual orientation and health status.

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--> Current methodologies allow collection of information on sexual orientation with sufficient precision to discover important relationships. Further, such questions have been used successfully in a number of research areas with different populations. For example, a question on sexual identity was included in the Nurses' Health Study II, a large national cohort study, without apparent loss of participation. Identity was the focus in this study because it was believed that sexual identity and social relationships, rather than sexual behavior, were more likely to be determinants of breast cancer and other core concerns of the study. The committee recommends that consideration be given to including questions about sexual identity, behavior, and attraction or desire in ongoing and future federal studies. These would include, for example, studies in which an association between sexual orientation and health can be hypothesized or in which discrimination based on sexual orientation may result in differential access to health care services. As appropriate, multiple dimensions of sexual orientation should be assessed whenever possible. Further, the rationale for including each question should be addressed in the study. These studies include, but are by no means limited to, the National Health and Nutrition Examination Survey, the National Household Survey on Drug Abuse, the National Survey of Family Growth, the American Community Survey, and the Youth Risk Behavior Survey. Pilot studies are recommended to test the feasibility of including these questions, with careful attention given to protecting confidentiality and assessing response bias and its impact on disclosure. The committee recommends that researchers submitting proposals for federally funded research, whether unsolicited R01s, responses to Program Announcements, or responses to Requests for Proposals, routinely evaluate whether they should include sexual orientation questions in their protocols, just as they would other sociodemographic variables. The National Institutes of Health (NIH) review groups should be encouraged to consider whether or not sexual orientation should be assessed in proposed studies, and recommend inclusion of this data field when it would strengthen the value of the results. Recommendation 4: Researchers studying lesbian health should consider the full range of racial, ethnic, and soc-

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--> ioeconomic diversity found among lesbians when designing studies on lesbian health; strive to include members of the lesbian study population under study in the development and conduct of research; and give special attention to protecting the confidentiality and privacy of the study population. There are a number of important considerations for conducting research on lesbian health. Because there are wide social and cultural differences in the health-related stressors, risks, and protective factors to which lesbians are exposed in different social and cultural milieus, the committee recommends that studies of lesbian health be funded that include the full range of variation in race and ethnicity, social class, age, and socioeconomic status. Particularly given the lack of knowledge about lesbian health issues, the committee believes that it is imperative that researchers strive to involve members of the lesbian population being studied in the development and conduct of research on lesbian health. This is particularly important for identifying lesbians to include in research samples and for securing their participation. Involvement of the target population may take many forms and may occur at various stages of the research process, including the interpretation of research results. The committee further urges researchers to disseminate the results of their research studies to research participants. The committee also recommends that special attention be given to ensure both confidentiality and the protection of human subjects in lesbian health research. This could be accomplished through a variety of mechanisms, including highlighting the unique ethical and research considerations in lesbian research to researchers and members of institutional review boards. Recommendation 5: A large-scale probability survey should be funded to determine the range of expression of sexual orientation among all women and the prevalence of various risk and protective factors for health, by sexual orientation.

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--> To date no large-scale probability studies on health have been conducted that collect information on sexual orientation. Conducting such a study would greatly increase knowledge about and understanding of sexual orientation in women, and improve understanding of the relationships among the dimensions of sexual orientation and health status and health behaviors. Recommendation 6: Conferences should be held on an ongoing basis to disseminate information about the conduct and results of research on lesbian health, including the protection of human subjects. The committee recommends that NIH and the Centers for Disease Control and Prevention (CDC) support periodic multidisciplinary conferences on lesbian health research methods and results. The first of these conferences should take place within the next two years, with subsequent meetings to take place on a regular basis. A model for such a conference is provided by the Conferences on Health Survey Methods at which researchers are convened to discuss the state of the art in a particular area of survey methodology. These conferences, which are convened periodically when the need arises for discussion of particular issues, have the objective of improving the quality of health survey data and enhancing their value and use by policy makers responsible for shaping health practice, policy, and programs (National Center for Health Statistics, 1996). Given that the field of lesbian health research is still in its infancy and many researchers and members of institutional review boards are not aware of the ethical issues that should be considered in the conduct of research on lesbian health, the committee further urges that the NIH, in collaboration with the CDC, sponsor a conference on the ethical issues involved in conducting research on lesbian health, including issues related to privacy and confidentiality, future use of data, recruitment of subjects, and informed consent. This conference would be designed to inform members of institutional review boards, researchers, and members of federal review panels and should involve representatives from the lesbian community. One suggested mechanism for disseminating this information is through the National Human Subjects Protections Education Workshop Program

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--> conducted by the NIH Office of Protection from Research Risks. The committee encourages that the ethical issues involved in conducting research with lesbians be included as a topic for these workshops, which are held periodically at universities across the country. Recommendation 7: Federal agencies, including the National Institutes of Health and the Centers for Disease Control and Prevention, foundations, health professional associations, and academic institutions, should develop and support mechanisms for broadly disseminating information about lesbian health to health care providers, researchers, and the public. The committee recommends that mechanisms be developed to disseminate knowledge and state-of-the-art methodological strategies for designing and implementing lesbian health studies to researchers and students in academic and nonacademic research institutions and community settings. The committee recommends the funding of a clearinghouse for research on lesbian health to make both published and unpublished research (e.g., conference papers) available to researchers and the public, including lesbian organizations. The committee further recommends that the clearinghouse make this information available via the World Wide Web as well as other means. The committee also recommends that health and mental health professional organizations feature discussions of lesbian health and the conduct of lesbian health research at their annual meetings. The committee notes that many of these organizations already have committees, caucuses, or divisions that focus on lesbian, gay, or bisexual issues. Training programs on lesbian health and the special issues involved in working with lesbians should be implemented across a wide range of providers, including pediatricians, psychologists, substance abuse counselors and other treatment staff, general practitioners, obstetricians and gynecologists, psychiatrists, and social workers. The committee recommends that curricula be developed and implemented to train health care providers in offering guidance regarding sexuality, including homosexuality, to adolescents and their families.

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--> Recommendation 8: The committee encourages development of strategies to train researchers in conducting lesbian health research at both the predoctoral and the postdoctoral levels. Surveys of lesbians in academic settings and of graduate students indicate that individuals interested in conducting research on issues affecting lesbians face numerous barriers. In addition to the personal stigma sometimes experienced, it is difficult to find mentors or sponsors for research and to secure the funding support needed. The availability of training funds would increase the ability of young researchers to pursue careers in lesbian health research and would enhance their skills in managing the challenges of conducting this research. A variety of strategies might be used to increase training opportunities for lesbian health researchers—for example, including lesbian health in the scope of pre- and postdoctoral programs in all health professions. NIH institutes could consider targeting training grants on lesbian health or including lesbian research in the scope of existing training grants. Further, foundations and academic institutions should consider providing training support in this area. Reference National Center for Health Statistics. 1996. Health Survey Research Methods: Conference Proceedings. DHHS Pub. No. (PHS) 96-1013. Hyattsville, MD: U.S. Department of Health and Human Services.