Dept. of Health & Human Services will include LGBT questions in national survey

The Department of Health and Human Services (HHS) Secretary Kathleen Sebelius announced June 29 plans to include sexual orientation questions in the 2013 National Health Indicators Survey, an important tool in gathering accurate health and wellness data from across the country. Gender identity questions are also being tested for addition to the survey.

"Today's announcement solidifies the commitment that Secretary Sebelius made...to provide more and better data about the health needs of lesbian, gay, bisexual and transgender Americans," Williams Institute Distinguished Scholar Dr. Gary Gates said last week. The Williams Institute has been a longtime leader in advancing the importance LGBT data collection. "As was clearly stated in the findings from the recent Institutes of Medicine report on LGBT health disparities, the need for more data is acute. I urge HHS to move as quickly as possible to include sexual orientation and gender identity questions on the NHIS."

Staff members from The Fenway Institute's Center for Population Research in LGBT Health and Network for LGBT Health Equity, and Fenway Health's Office of Government Affairs worked closely with the HHS in developing the new data collection policies.

"Under Secretary Sebelius' leadership, the Department of Health and Human Services has taken an important step to legitimize and recognize LGBT health issues and disparities in the eyes of the federal government," said Dr. Stephen L. Boswell, Fenway Health President & CEO. "Hopefully this will serve as an example for other government departments and branches as they begin to acknowledge the unique characteristics and needs of the individuals and families who make up the American LGBT community."

The addition of these questions could prove a key step in gaining accurate information about the overall health and wellness of the LGBT community.

"These new guidelines will allow the federal government to collect some of the data we need to better understand LGBT health needs and create programs and advocate for resources to address them." said Dr. Kenneth Mayer, Co-Chair and Medical Research Director of The Fenway Institute. "The lack of data in this area has been a serious impediment to LGBT health programming development and implementation."

It is the community's hope that the resulting population-based data will fill significant a gap long lamented by researchers and health professionals.

"Our nation's aim to reduce health disparities related to sexual orientation, as stated in Healthy People 2010 and Healthy People 2020, has been hampered by lack of broad population-based quality data," said Columbia University Professor and Williams Senior Scholar Dr. Ilan H. Meyer. "Accurate and reliable data about the health of the LGBT population are essential for forming public health policies, setting research priorities, and designing effective interventions. HHS's announcement that it will include questions about sexual orientation and gender identity in health surveys is important news because data collected in such surveys will allow public health professionals and policy makers to understand patterns of and risks for disease among LGBT people, to design effective interventions, and to track our progress over time in reducing health disparities related to sexual orientation and gender identity."

Fenway Health commended the inclusion of sexual orientation questions and the proposed inclusion of gender identity questions, and is eagerly anticipating the important health data that will result from the updated survey.

"The inclusion of transgender measures along sexual orientation is historic," said Dr. Scout, a transgender researcher and the Director of the Network for LGBT Health Equity. "The current sporadic inclusion in surveys usually only addresses sexual orientation, leaving community members with some of the highest documented health disparities invisible."

Dr. Scout said that the request for inclusion in population-based surveys and studies is "literally the number one LGBT health request for decades. ...We know that getting solid data about our disparities will change the face of LGBT health."

"The 2013 inclusion of sexual orientation in NHIS data collection shows that HHS is taking seriously the Institute of Medicine's recent report on LGBT Health which called on researchers to engage LGBT people in health studies and collect data to identify and better understand health conditions that affect them," said Dr. Judith Bradford, Co-Chair of The Fenway Institute and Director of The Center for Population Research in LGBT Health.

"This is a historic day for the field of LGBT health," Hutson W. Inniss, executive director of the National Coalition for LGBT Health, said. "At the National Coalition for LGBT Health, we have been working with our members to advocate for such progress and develop tools that can be used on these surveys. We know that LGBT individuals experience unique health disparities, and tracking this data on the national level will be a remarkable step forward to documenting and identifying ways to reduce the disparities that LGBT people face."

Activists cautioned, however, that the next steps must be careful ones. "While the DHHS's new guidelines are a much-needed positive step in filling the void of health information assessing LGBT health needs nationwide, transgender advocacy groups must work closely with DHHS to determine the best way to collect data on gender identity that is to be implemented into federal health surveys," said Gunner Scott, Executive Director of the Massachusetts Transgender Political Coalition (MTPC). "Only then can we start to create programs and advocate for resources addressing the health needs of all members of the LGBT community, especially transgender youth and adults."

"Now we need to work with HHS to develop gender identity measures so that the entire LGBT community is represented in this important federal health survey," Bradford added.

The advent of sexual orientation and gender identity policies is joined by enhancements of race/ethnicity data collection.

"Together these new LGBT and race/ethnicity data standards represent a huge jump forward in the fight to eliminate health disparities," said Dr. Scout. "The experiences of a native Hawai'ian person are not at all like that of a Hmong immigrant. Now with granular data collection for race/ethnicity, we will be able to see those distinctions. Again, this signals a new era in truly committing to monitoring and eliminating all health disparities. We applaud Secretary Sebelius and the Garth Graham of the Office of Minority Health for their leadership on this issue."