HHS unveils plan to start data collection on LGBT health

Secretary of Health & Human Services Kathleen Sebelius (Blade file photo by Michael Key)

The Department of Health & Human Services unveiled on Wednesday new details about plans to collect data on the LGBT population as part of federal health surveys.

According to a statement from the department, HHS will incorporate questions on sexual orientation into the National Health Interview Survey by 2013. Further, the department plans to hold a series of research roundtables with experts to determine the best way to collect data related to gender identity.

Secretary of Health & Human Services Kathleen Sebelius already announced last week that her department would start collecting health data on LGBT people during a news conference in response to a question from the Washington Blade. The information unveiled on Wednesday sheds greater light on the plan to start collecting this information.

In a statement, Sebelius emphasized that collecting health data on the LGBT population could lead to reduction of health disparities faced by the LGBT community.

“Health disparities have persistent and costly effects for minority communities, and the whole country,” Sebelius said. “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.”

According to a fact sheet from HHS, the administration has the authority to collect data on the LGBT population as part of the health care reform law passed by Congress last year, which allows the department the opportunity to collect demographic data to further improve understanding of health care disparities.

“In the past, identifying disparities and effectively monitoring efforts to reduce them has been limited by a lack of specificity, uniformity, and quality in data collection and reporting procedures,” the fact sheet states. “Consistent methods for collecting and reporting health data will help us better understand the nature of health problems in the LGBT community.”

The plan from HHS states that limited data on the LGBT community already shows the population is subject to certain health problems more than others. For example, gay and bisexual men make up more than half of new HIV infections in the United States each year; HIV infection among transgender women exceeds 25 percent nationwide; and lesbian and bisexual women are prone to receive less routine care than other women, including breast and cervical cancer screening.

The fact sheets made public on Wednesday outline the path under which the Obama administration plans to start collecting data on individuals based on their sexual orientation and gender identity:

* June to Dec. 2011 — Continue cognitive testing and begin field testing of sexual orientation data collection.

* Summer 2011 — Conduct first roundtable on gender identity data collection development. Complete initial development of sexual orientation data collection questionnaire.

* Winter 2011 — Conduct follow-up roundtable on gender identity data collection.

* Spring 2012 — Conduct and complete initial field testing of sexual orientation data collection. HHS Data Council presents a strategy to include gender identity data collection in HHS surveys.

* Winter 2012 — Conduct and complete large scale field test of sexual orientation data collection.

* 2013 — If the field test is successful, implement new data collection on sexual orientation into the full National Health Interview Survey data collection.

Gary Gates, distinguished scholar at the Williams Institute at University of California in Los Angeles, said the new details on data collection for LGBT people “solidifies the commitment that Secretary Sebelius made last week to provide more and better data” on LGBT health needs.

“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,” Gates said. “I urge HHS to move as quickly as possible to include sexual orientation and gender identity questions on the NHIS.”

Mara Keisling, executive director of the National Center for Transgender Equality, called the commitment from the Obama administration to collect data on the LGBT population “a big deal.”

“When the federal government starts to count us, we will have the proof of the health disparities we all know exist,” Keisling said. “With the data, advocacy for better health programs becomes possible, vital resources can be directed to our community, and better health for transgender people will follow.”