by Shaun Knittel - SGN Associate Editor

Researchers need to proactively engage LGBT people in health studies and collect data on these populations to identify and better understand health conditions that affect them, says a new report from the Institute of Medicine.

According to the committee that wrote the report, 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.

The report provides a thorough compilation of what is known about the health of each of these groups at different stages of life and outlines an agenda for the research and data collection necessary to form a fuller understanding.

'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 committee chair Robert Graham, who serves as professor of family medicine and public health sciences as well as Robert and Myfanwy Smith endowed chair of the department of family medicine at the 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. 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.'

According to the National Academy of Science, because LGBT individuals make up a minority of the population, researchers face challenges in recruiting sufficient numbers of these individuals in general population surveys to yield meaningful data.

'Stigma experienced by gender and sexual minorities can make them reluctant to disclose their orientation, worsening the problem,' said National Academy of Sciences officials in a March 31 press release. 'Moreover, it is difficult to synthesize data about these groups when studies and surveys use a variety of ways to define them.'

Because demographic data provide the foundation for understanding any population's status and needs, federally funded surveys should proactively collect data on sexual orientation and gender identity, just as they routinely gather information on race and ethnicity, the report says. Information on patients' sexual orientation and gender identity also should be collected in electronic health records, provided that privacy concerns can be satisfactorily addressed, the committee said. The National Institutes of Health should support the development of standardized measures of sexual orientation and gender identity for use in federal surveys and other means of data collection.

In addition, NIH should provide training opportunities in conducting research with LGBT populations. Training should engage researchers who are not specifically studying LGBT health issues as well as those who are. The agency should also use its policy on the inclusion of women and racial and ethnic minorities in clinical research as a model to encourage grant applicants to address how their proposed studies will include or exclude sexual and gender minorities.

'In detailing just how little is known about the health issues confronting Lesbian, Gay, Bisexual, and Transgender people, the Institute of Medicine report exposes the disturbing fact that our community has been largely ignored in most medical and health services research,' said Rea Carey, executive director of the National Gay and Lesbian Task Force. 'We are pleased our survey was able to help inform the committee as it created the IOM report on gaps and opportunities in LGBT data and research, which shines a critical light on the health disparities facing LGBT people and provides recommendations to assist researchers in identifying and addressing these needs.'

Congresswoman Tammy Baldwin (D-Wis.), a member of the House Health Subcommittee and co-chair of the LGBT Equality Caucus, said, 'For years in congressional hearings, briefings, and meetings, I have asked our national health policy officials and medical experts, 'What do you know about LGBT health?' Only to hear, 'I have to get back to you.' Today, we've gotten a well-researched and most welcome response. I am delighted that after years of advocating for more attention to LGBT health disparities, IOM's report will bring us closer to the goal of promoting good health for all Americans.'

'We can't overcome LGBT health disparities until we know what those disparities are and where they exist. Once we have solid data, the proper responses will follow. I look forward to working with my colleagues in Congress and at the Department of Health and Human Services to implement the recommendations of the IOM report,' Baldwin explained.'

Baldwin will soon reintroduce the Ending LGBT Health Disparities Act, building on the IOM report's recommendations.

The study was sponsored by the National Institutes of Health. Established in 1970 under the charter of the National Academy of Sciences, the Institute of Medicine provides independent, objective, evidence-based advice to policymakers, health professionals, the private sector, and the public. The National Academy of Sciences, National Academy of Engineering, Institute of Medicine, and National Research Council make up the National Academies. For more information, visit http://national-academies.org or http://iom.edu.

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