Affordable Care Act to improve data collection, reduce health disparities [for LGB(T?) folk]

Is this really an improvement for the LGBT population? According to the fact sheet,


The proposed data standard for sex is male and female. The survey item can be viewed at


How will this help collect transgender data?

News Release

June 29, 2011
Contact: HHS Press Office
(202) 690-6343

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 under docket number HHS-OMH-2011-0013.  Public comments will be accepted until August 1.  Information is also available at

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

For more information on improving data collection within the LGBT community visit


Note: All HHS press releases, fact sheets and other press materials are available at

Last revised: June 29, 2011


Many racial and ethnic minorities, people with disabilities, lesbian, gay, bisexual, and transgender (LGBT) communities, and other commonly underserved populations face unique health challenges, have reduced access to health care and insurance, and often pay the price with poorer health throughout their lives. Existing research suggests LGBT people and families may face significant challenges associated with health disparities in insurance coverage and access to healthcare services, including preventive care such as cancer screenings.

The limited data available suggest that:

  • Gay and bisexual men comprise more than half of new HIV infections in the U.S. each year, and HIV prevalence among transgender women exceeds 25% nationwide.
  • Lesbian and bisexual women get less routine care than other women, including breast and cervical cancer screening.
  • Approximately 30% of LGBT youth report having been physically abused by family members because of their sexual orientation or gender identity or expression.

Negative health outcomes for LGBT people may be due to a variety of factors, including reduced access to employer-provided health insurance and a lack of cultural competence in the health care system.

The Institute of Medicine (IOM) in its March 2011 report, The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding, emphasized the need for collection of gender identity and sexual orientation data on federally supported surveys. Due to limited data collection on sexual orientation and gender identity, the nature of these health disparities in the LGBT community are still in question.

The Affordable Care Act and LGBT Data Collection

The Affordable Care Act invests in the implementation of a new health data collection and analysis strategy.

  • Section 4302 of the Affordable Care Act contains provisions to strengthen federal data collection efforts by requiring that all national federal data collection efforts collect information on race, ethnicity, sex, primary language, and disability status.
  • The law also provides the Department of Health and Human Services (HHS) the opportunity to collect additional demographic data to further improve our understanding of healthcare 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. Consistent methods for collecting and reporting health data will help us better understand the nature of health problems in  the LGBT community.

A Commitment to Improvement: A Timeline for LGBT Data Collection

HHS is developing a national data progression plan intended to begin the integration of sexual orientation and gender identity variables into HHS national surveys.

Sexual  Orientation
The Department has collected LGBT-related data in several surveys in the past, but there are a number of challenges. The National Center for Health Statistics (NCHS) has improved comprehension and response rates over time by refining its methods. However, concern continues as missing data tend to be concentrated in certain population sub-groups. To enhance the quality of the data, the HHS Data Council, NCHS, and other relevant agencies across the federal government are testing ways to reduce bias in the estimates.

Gender Identity
HHS surveys have not collected data on transgender status. While HHS is in the beginning stages of developing data collection on gender identity, many researchers (such as the Williams Institute at the University of California Los Angeles and the Center for Population Research in LGBT Health at the Fenway Institute) have been working on such data collection for several years.

HHS will hold two roundtables with key experts in collecting data on sexual orientation and gender identity. HHS officials and the experts will review existing literature, discuss proposed questions, and develop a progression plan for gender identity data testing. The timeline:

  • June – December 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 NHIS data collection.

Improving the Health of LGBT Americans

The Obama Administration is committed to working with all Americans to create the brightest future for our country, including greater equality and better health for LGBT Americans. HHS continues to make significant progress toward protecting the rights and improving the health of LGBT Americans, such as:

  • implementing the Affordable Care Act, the health care law helping to improve access to care for all Americans, including individuals in the LGBT community
  • funding the above referenced study by the IOM to identify research gaps and opportunities related to LGBT health and outline a research agenda
  • issuing guidance to state Medicaid agencies on financial protections for same-sex couples
  • issuing new rules requiring hospitals to protect patients’ right to choose their own visitors during a hospital stay, including a visitor who is a same-sex domestic partner.


Posted on: June 29, 2011

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