Officials to Begin Including LGBTs in Health Data

Federal health officials will begin collecting crucial health data on LGBT individuals, as well as drafting new standards for reporting on race, ethnicity, and other demographic characteristics, the U.S. Department of Health and Human Services announced Wednesday.

Researchers have cited inadequate data collection on sexual orientation and gender identity in federally funded surveys and electronic health records: In a consensus report released in March by the Institute of Medicine of the National Academies, experts recommended such data inclusion for LGBT populations, and urged the National Institutes of Health, which commissioned the report, to devote more research to LGBT health.

"Health disparities have persistent and costly affects for minority communities, and the whole country," HHS secretary Kathleen Sebelius said in a Wednesday statement. "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."

Beginning in 2013, the federal agency will begin to collect and include health questions relating to sexual orientation, as well as "begin a process to collect information on gender identity," under the Affordable Care Act.

"I think this has been the watershed issue for LGBT scientific researchers for the past few decades," Dr. Robert Garofalo, a committee member of the IOM study and a professor of pediatrics at Northwestern University's Feinberg School of Medicine, said during a March press conference in Washington, D.C. on the study's release. "This is something we've done for other populations, and quite frankly, we simply should be doing it now for this population. And I think this document goes a long way in framing it from a very scientific perspective. It's entirely now a matter of political will to get it done."

Dr. Ilan H. Meyer, a Columbia University professor and senior scholar at the Williams Institute at the University of California-Los Angeles, said the move by HHS "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."

The full HHS press release from Wednesday, after the jump:

FOR IMMEDIATE RELEASE
June 29, 2011

Affordable Care Act to improve data collection, reduce health disparities

HHS announces new draft standards to improve the monitoring of health data by race, ethnicity, sex, primary language, and disability status, and begins planning for the collection of LGBT health data

HHS Secretary Kathleen Sebelius today announced new draft standards for collecting and reporting data on race, ethnicity, sex, primary language and disability status, and announced the administration's plans to begin collecting health data on lesbian, gay, bisexual and transgender (LGBT) populations. Both efforts aim to help researchers, policy makers, health providers and advocates to identify and address health disparities afflicting these communities.

"Health disparities have persistent and costly affects for minority communities, and the whole country," Secretary 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."

Under the plan announced today, HHS will integrate questions on sexual orientation into national data collection efforts by 2013 and begin a process to collect information on gender identity. This plan includes the testing of questions on sexual orientation to potentially be incorporated into the National Health Interview Survey. The department 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.

"The first step is to make sure we are asking the right questions," Secretary Sebelius said. "Sound data collection takes careful planning to ensure that accurate and actionable data is being recorded."

The proposed standards for collection and reporting of data on race, ethnicity, sex, primary language and disability status in population health surveys are intended to help federal agencies refine their population health surveys in ways that will help researchers better understand health disparities and zero in on effective strategies for eliminating them.

The race and ethnicity standards, for example, will provide additional categories from which racial and ethnic differences in health care and outcomes can be examined in more detail, particularly among Asian, Hispanic/Latino and Pacific Islander populations. The disability standards would consist of six items that are already being used successfully in the Census Bureau's American Community Survey. It is intended to improve researchers' ability to monitor health disparities.

"These new data standards, once finalized, will help us target our research and tailor stronger solutions for underserved and minority communities," added HHS Director of the Office of Minority Health, Dr. Garth Graham. "To fully understand and meet the needs of our communities, we must first thoroughly understand who we are serving."

In anticipation of these efforts, HHS, over the past year, has consulted with federal agencies, requested recommendations from the HHS Data Council, and held listening sessions with relevant community stakeholders. The public may submit comments for the draft minority data collection standards at www.regulations.gov under docket number HHS-OMH-2011-0013. Public comments will be accepted until August 1. Information is also available at www.minorityhealth.hhs.gov/section4302.
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.

For more information on improving data collection to reduce health disparities please visit https://www.healthcare.gov/news/factsheets/disparities06292011a.html

For more information on improving data collection within the LGBT community visit https://www.healthcare.gov/news/factsheets/lgbt06292011a.html