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June 29, 2011

HHS takes lead in laying foundation for data-driven policies on lgbt health issues

From Metro Weekly:

Today, the Department of Health and Human Services announced a plan to include sexual orientation and gender identity in health data collection, a result of discretion granted to the secretary of HHS in a provision of the Affordable Care Act addressing data collection regarding health disparities. 

Specifically, today's plan requires "HHS [to] integrate questions on sexual orientation into national data collection efforts by 2013 and begin a process to collect information on gender identity." 

The release notes that the plan includes the testing of questions on sexual orientation to potentially be incorporated into the National Health Interview Survey.  According to today's information, HHS also intends to convene "a series of research roundtables with national experts to determine the best way to help the department collect data specific to gender identity."

Under section 4302 of the Affordable Care Act, data collection efforts to understand health disparities relating to race, ethnicity, sex, primary language and disability status are required. The secretary, however, has authority to require additional standards.

The moves, advocates say, are a first step in determining standards for inclusion of sexual orientation and gender identity questions in all HHS surveys, which include agencies like the Centers for Disease Control and nationwide surveys like the Youth Risk Behavior Survey. 

In a release announcing the move, Sebelius said, "Health disparities have persistent and costly affects for minority communities, and the whole country. Today we are taking critical steps toward ensuring the collection of useful national data on minority groups, including for the first time, LGBT populations. The data we will eventually collect in these efforts will serve as powerful tools and help us in our fight to end health disparities."

Explaining the significance of the move, Center for American Progress senior vice president for external affairs Winnie Stachelberg said, "It's foundational. One of the things that we always try to do here at a think tank is quantify the problem and understand the problem – and base your solutions on facts. 

"You can't do that unless you have the data about the gay and transgender community. And finally we'll be able to collect that data so that we can develop solutions that actually address the problems – not the notional problems, but the actual ones that are data driven."

Williams Institute scholar Dr. Gary Gates responded to the news in a statement, saying, "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." ...

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Comments

Dear Nan – Thanks for your June 29 post on LGBT data collection under the Affordable Care Act.
As I read the statute, §4302 of the ACA, it requires collection of data on race, gender disability and sexual orientation. “The Secretary shall ensure that. . . any federally conducted or supported health care or public health program, activity or survey (including Current Population Surveys and American Community Surveys conducted by the Bureau of Labor Statistics and the Bureau of the Census) collects and reports, to the extent practicable. . . “ etc.
I assumed that this meant that claims forms for all federally financed programs would be revised to require data. It is only with the claims data that you get meaningful detail.
The regulations that came out on Thursday, June 30, are not crystal clear. 76 Fed. Reg. 38397. They say, “The law requires that, once established, these data collection standards be used, to the extent practicable, in HHS national population health surveys.” Sure, but, I think the law extends far beyond surveys, and requires collection of data for any federally supported health care.
Checking with the usual sources, I do not see anyone protesting the seemingly narrow scope of the regulations. Is this on your radar? Ideas of who else might be concerned about this?
Hope you are having a great Fourth of July week-end.

Thanks so much for being truly on top of this, Sylvia. I'll do some checking.

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