Editors' Note: Guest blogger Henia Handler is the Director of Government Affairs for Fenway Health.
For more than a decade the national community of lesbian, gay, bisexual and transgender (LGBT) researchers has remained true to illuminating our knowledge on the factors that affect the community's health. This week the Institute of Medicine (IOM) released a historic report on the state of research addressing the health of LGBT populations. Recommendations from the report will shape future research and research training by identifying gaps and targeting LGBT health disparities. Research to date has been hampered by the absence of LGBT inclusion in large national and state surveys which has made this population largely invisible in the eyes of many researchers and policy makers.
The IOM report follows a series of steps undertaken by the US Department of Health and Human Services over the past 12 years to increase LGBT inclusion in federal health surveys and priorities. In 1999 the IOM sponsored a conference that highlighted the omission of lesbians within the growing arena of women's research. In 2000, Healthy People 2010 spoke to the disparities experienced by LGBT persons in accessing primary medical, mental health and substance abuse treatment, it presented precise data on the burden of smoking, obesity and alcohol consumption across the LGBT community.
In the last year, there have been even greater efforts to recognize and include LGBT people.
President Obama issued an executive order in April, 2010 on hospital visitation rights for same sex couples. In July of last year, the White House issued a National AIDS Strategy with a specific focus on reducing HIV infections in gay and bisexual men and transgender people. Then in December, the federal government released Healthy People 2020, the blueprint for national public health prevention and policy goals for the next decade, had historic inclusion of LGBT populations.
These gains have been important, but lack of good data on the needs and experiences of LGBT people is still a challenge. As recently as January 2011, the CDC MMWR report stated that efforts to address disparities are thwarted in the absence of good data, highlighting the seriousness of the "data gaps in two critical disparity domains - disability status and sexual orientation and identity."
The recommendations in the IOM report lay a foundation for the collection "good data" related to sexual orientation and gender identity. The objective should be inclusion on national health surveys, access to these data sources, and publication and dissemination of new knowledge. This investment to address the gaps in research will ultimately provide the researchers the opportunity to dissect the underlying causes of health inequities affecting LGBT persons.
Recommendations in the IOM report include:
- Researchers must engage LGBT people in health studies and collect data on these populations to identify and better understand health conditions that affect them.
- Federally-funded surveys should proactively collect data on sexual orientation and gender identity, just as they routinely gather information on race and ethnicity.
- Information on patients' sexual orientation and gender identity should be collected in electronic health records, provided that privacy concerns can be adequately addressed.
- The National Institutes of Health (NIH) should support the development of standardized measures of sexual orientation and gender identity for use in federal surveys and other means of data collection.
- The NIH should provide training opportunities in conducting research with LGBT populations and encourage grant applicants to address how their studies would include or exclude sexual and gender minorities.
Increased data collection on LGBT people will not only help us to address specific healthcare needs and health disparities, but will also provide an opportunity to explore the social factors that strengthen the community, what has contributed to its resiliency and hope, and what enhances the community's power and presence to defy stigma and shape its good health. Despite a historic lack of culturally competent programs and support, LGBT families are thriving and their children are well and achieving in all the ways that children do. Seniors are forging their way to lives of dignity and respect as people who are "out and about", increasingly vocal and demanding equality within the environments they fill and services they access. More and more LGBT people of all backgrounds are living open and fulfilled lives.