Research into disease prevalence and barriers to appropriate care where lesbian, gay, bisexual and transgender (LGBT) people are concerned remains a critically underdeveloped field of knowledge, a new report sponsored by the National Institutes of Health says.
Released on Thursday, the report stresses the need for proactive research and for federally funded surveys to engage more with the LGBT community. The report also recognizes that a failure to acknowledge the diversity of the LGBT community may be to blame for gaps in research, finding that much of the existing material on disease prevalence and treatment lumps LGBTs into one group without having explored individual needs for groups like LGBT elders, LBT women, and LGBTs of different races.
The report also notes that stigma surrounding LGBT identity hinders data gathering.
The report doesn’t explicitly cite inequalities but certainly fears of employment discrimination and discrimination over partner rights may also play a part in preventing LGBTs from being entirely honest when questioned about health related issues.
Researchers need to proactively engage lesbian, gay, bisexual, and transgender 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. 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, said the committee that wrote the report.
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, 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. 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.”
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. 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 also should 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.
Speaking on the report, Kathleen Sebelius of the U.S. Department of Health and Human Services said in a press release:
“I want to thank the Institute of Medicine for conducting this important study, at the request of the National Institutes of Health (NIH), on the state of the science regarding the health of lesbian, gay, bisexual and transgender (LGBT) people.
“The report provides the scientific community with the first comprehensive overview of health-related research in this important area. It concludes by recommending that NIH develop and implement a comprehensive research agenda to advance our knowledge and understanding of LGBT health, including demographic studies and inequities in health care, and the social contexts in which LGBT people live. The report also calls for federally funded surveys and electronic health records to collect data on sexual orientation and gender identity while protecting patient confidentiality. In addition, the report recommends enhanced training to strengthen LGBT health research at NIH, and asks NIH to encourage grant applicants to address explicitly the inclusion or exclusion of sexual and gender minorities in their clinical studies.
“This report is an important step in identifying research gaps and opportunities, as part of an overall effort to understand and address the health needs of lesbian, gay, bisexual, and transgender people. We look forward to continuing our work to address these needs and reduce LGBT health disparities.”
To read the report brief and the full report, please click here.