More data is needed to understand the health of lesbian, gay, bisexual and transgender people and one way to gather that necessary information is to have federally funded surveys ask this information on forms, such as they do for race and gender, and collected in electronic health records, according to a new report from the Institute of Medicine.

The groundbreaking report, considered "historic" by some, is another step in the federal recognition of LGBT people as a population who has its own specific health needs.

"It's easy to assume that because we are all humans, gender, race, or other characteristics of study participants shouldn't matter in health research, but they certainly do," said IOM committee chair Robert Graham in a statement released today. Graham is professor of family medicine and public health sciences and Robert and Myfanwy Smith Chair, department of family medicine, University of Cincinnati College of Medicine, Cincinnati.

"It was only when researchers made deliberate efforts to engage women and racial and ethnic minorities in studies that we discovered differences in how some diseases occur in and affect specific populations,” Graham added. “Routine collection of information on race and ethnicity has expanded our understanding of conditions that are more prevalent among various groups or that affect them differently. We should strive for the same attention to and engagement of sexual and gender minorities in health research."

‘Historic’ report released on the need to gather critical data on LGBT health

The IOM report, titled “The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding,” was sponsored by the National Institutes of Health. The report, one of the most comprehensive reports on LGBT health to date, includes information from an 18-month review that began in the fall of 2009. The report is designed to outline a plan for the NIH to design and fund research to uncover and realize the disparities in LGBT health.

Dr. Judith Bradford, director of the Center for Population Research in Lesbian, Gay, Bisexual and Transgender Health at The Fenway Institute and one of the committee members, said this report is “historic.”

“The IOM report assembles existing research and makes recommendations for next step priorities. This provides a framework for identifying and reducing health disparities among sexual and gender minorities and directly supports the health of our community. It is truly historic,” Bradford said in a statement.

Added Dr. Harvey J. Makadon, also of the Fenway Institute who sat on the committee, “This effort is clearly an important first step to creating an agenda that will advance the health of LGBT individuals. Aside from a research agenda, we must recognize the importance of educating health professionals about LGBT issues and creating welcoming environments for care,” Makadon said. “Studies show a reluctance to care for LGBT individuals and education about LGBT health issues in medical schools and schools for other health professionals is minimal.”

According to the 14-member committee of health experts from universities across the nation, compiling data on the health of LGBT people because LGBT individuals are a minority of the population, making it difficult to recruiting enough participants in LGBT health studies to gather needed data. Also, the stigma LGBT people face is another drawback in trying to gather information about LGBT health because many gay, lesbian, bisexual and transgender people are fearful of revealing their sexual orientation.

“The scarcity of research yields an incomplete picture of LGBT health status and needs, which is further fragmented by the tendency to treat sexual and gender minorities as a single homogeneous group,” according to a statement from the committee.

To accurately gather information on LGBT people and their health issues, the committee came up with a list of recommendations for the NIH:

The NIH should implement a research agenda designed to advance knowledge and understanding of LGBT health.

“Given that lesbians, gay men, bisexual women and men, and transgender people are in fact separate populations, it is important to note that most of the research on these populations has focused on lesbians and gay men. Much less research has been conducted on bisexual and transgender people. The committee therefore recommends research that focuses on all of these populations,” the report states.

Data on sexual orientation and gender identity should be collected in federally funded surveys administered by the Department of Health and Human Services and other relevant federally funded surveys.

“Similar to race and ethnicity data, data on sexual and gender minorities should be included in the battery of demographic information that is collected in federally funded surveys. These data would help those seeking to undertake the demographic research recommended as part of the research agenda proposed by the committee. For example, given the interactions between social and economic circumstances and health, data from social and economic surveys could provide valuable information on the context for health disparities experienced by LGBT people. Similarly, surveys on crime and victimization, housing, and families would provide data on variables that relate to the health of sexual and gender minorities. This data collection would be aided by the development of standardized measures for sexual orientation and gender identity,” the committee writes.

Data on sexual orientation and gender identity should be collected on electronic health records.

“Collecting these detailed patient-level data, with adequate privacy and security protection as is needed for all data collected in electronic health records, could assist in identifying and addressing LGBT health disparities. At present, possible discomfort on the part of health care workers with asking questions about sexual orientation and gender identity, a lack of knowledge by providers of how to elicit this information, and some hesitancy on the part of patients to disclose this information may be barriers to the collection of meaningful data on sexual orientation and gender identity. Nonetheless, the committee encourages the Office of the National Coordinator to begin planning for the collection of these data as part of the required set of demographic data for electronic health records. Detailed patient-level data such as those found in electronic health records could provide a rich source of information about LGBT populations and subpopulations,” according to the report.

NIH should support the development and standardization of sexual orientation and gender identity measures.

“The development and adoption of standardized measures in federally funded surveys would assist in synthesizing scientific knowledge about the health of sexual and gender minorities,” the report states.

NIH should support methodological research that relates to LGBT health.

“Particularly helpful would be studies aimed at developing innovative ways to conduct research with small populations and determining the best ways to collect information on sexual and gender minorities in research, health care and other settings.”

A comprehensive research training approach should be created to strengthen LGBT health research at NIH.

“To encourage more research on LGBT health issues, NIH should expand its intramural and extramural training programs, focusing on three audiences: researchers who are working with or considering working with LGBT populations, researchers who may not be aware of LGBT health issues, and NIH staff.”

NIH should encourage grant applicants to address explicitly the inclusion or exclusion of sexual and gender minorities in their samples.

“Using the NIH policy on the inclusion of women and minorities in clinical research as a model, NIH should encourage grant applicants to address explicitly the extent to which their proposed sample includes or excludes sexual and gender minorities. Researchers would thereby be prompted to consider the scientific implications of including or excluding sexual and gender minorities and whether these groups will be included in sufficient numbers to permit meaningful analyses,” the reports states.