United States Health and Human Services (HHS) Secretary Kathleen Sebelius today announced that sexual orientation measures would begin to be included in the federal government’s National Health Indicators (NHIS) Survey in 2013 and gender identity measures are being tested for addition when ready. NHIS is the major tool that the Department of Health and Human Services uses to keep tabs on the health of the nation. HHS also announced their intent to convene community researchers to ensure further testing builds on the work already done.
Under Section 4302 of the Affordable Care Act, the Secretary is required to ensure that any federally conducted or supported health care or public health program, activity or survey collects and reports data, to the extent practicable, on race, ethnicity, sex, primary language and disability status, as well as other demographic data on health disparities as deemed appropriate by the Secretary.
Staff 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 all worked closely with HHS staff to craft the new data collection policy for NHIS.
“Under Secretary Sebelius’ leadership, the Department of Health and Human Services has taken an important step to legitimize 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 recognize the unique characteristics and needs of the individuals and families who make up the American LGBT community.”
“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. “Now we need to work with HHS to develop gender identity measures so that entire LGBT community is represented in this important federal health survey.”
“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 is a serious impediment to LGBT health programming development and implementation.”
“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 notes how long scientists and advocates have been pushing for this inclusion, “This 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 federal and state health systems are organized around eliminating disparities that their own tools measure, as long as we weren’t being measured by their surveys, we always had to plead with them to address our health disparities at all. For example, states are allowed to prioritize LGBT disparities in the recently released Community Transformation Grants, only if they had data. So not having LGBT health data was our catch-22. Today’s announcement is the first concrete step to eliminating that catch-22 forever.”
For more information on improving data collection to reduce health disparities please visit http://www.healthcare.gov/news/factsheets/disparities06292011a.html.
For more information on improving data collection within the LGBT community visit http://www.healthcare.gov/news/factsheets/lgbt06292011a.html.