Systematic Data Collection on Sexual and Gender Identify Minorities

The ground-breaking decision to collect and monitor health behaviors and outcomes based on sexual orientation and gender-identity will allow for a better understanding of the overall health of the LGBT communities. This is a big step forward.
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All those have worked tirelessly in the efforts to improve the overall health and well-being of the LGBT community have reason for celebration. The Secretary of the Department of Health and Human Services, Kathleen Sebelius, announced this week that sexual orientation and gender identify will be collected as part of standard demographic questions on all HSS funded national health surveys. Sebelius' commitment to systematic data collection on sexual orientation and gender identity is the latest of several important national-level developments (the recently release Institute of Medicine report on LGBT health; the requirement of LGBT cultural competency training for health care personnel) with implications for improving the health of lesbians, gays, bisexuals, and transgender (LGBT) persons.

A growing body of research suggests that members of the LGBT communities face unique health threats and are at elevated risk for health disparities in a variety of areas including cancer, cardiovascular disease, diabetes, HIV infection, and poor mental health. The risk for health disparities is partially accounted for by the higher than expected rates of health risk behaviors reported among LGBT groups. For example, lesbians and bisexual women are more likely to smoke, drink heavily, and to be over-weight compared to heterosexual women. The exact reasons for these elevated rates of health risk behaviors are unknown. However, similar to members of other marginalized groups, stress associated with discrimination and social isolation is presumed to a driver of these behaviors.

The ground-breaking decision to collect and monitor health behaviors and outcomes based on sexual orientation and gender-identity will allow for a better understanding of the overall health of the LGBT communities and sub-populations based on race and other background characteristics. In the coming years, we will be able to determine whether elevated rates of health risk behaviors commonly observed in volunteer samples of LGBT persons are also observed in larger more representative samples. Additionally, we can determine whether these elevated risk behaviors, if observed, are also linked to higher than expected rates of chronic health conditions such as diabetes. The availability of these data will be instrumental in informing health prevention and promotion initiatives for this underserved population group.

This week's announcement by Sebelius is a timely response to a primary recommendation from the recently released Institute of Medicine (IOM) report on LGBT health. In that report there was an explicit call for the collection of sexual orientation and gender identity information on all federally funded surveys administered by HHS. Systematic measurement and monitoring of health status and health indicators has been critical to the now decades long efforts to reduce health disparities among other underserved groups such as racial and ethnic minorities. It was only after the identification of clear patterns of health disparities among racial and ethnic minorities and the individual, community, and institutional factors associated with these disparities that targeted health promotion efforts were put into practice. The reduction of racial and ethnic health disparities is an ongoing battle; nevertheless, the availability of data is the cornerstone of positive change.

The fulfillment of this recommendation by the DHH will be vital to the actualization of another key recommendation of the IOM, that is, the mapping of a research agenda to advance knowledge and understanding of LGBT health. The confluence of some many recent "right next steps" regarding the health of the LGBT community bodes extremely well indeed.

Alicia Matthews is an Associate Professor and Clinical Psychologist at the University of Illinois at Chicago. Dr. Matthews is also affiliated with Howard Brown Health Center, The Network for LGBT Health Equity, and the Fenway Institute.

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