LGBT Surveillance: Next Steps for the Federal Government Summary


On Monday, November 22nd, we held a BrownBag Webinar called “LGBT Surveillance: Next Steps for the Federal Government.” The call focused on a discussion on federal opportunities for LGBT data to be considered for inclusion in national surveillance (surveys).

The crux of the conversation’s goal was to gather Lessons Learned from stories that callers shared on gathering LGBT data on the state level. In our highest attended BrownBag, participants shared their strategies for LGBT inclusion as well as barriers that have come up in that process. Scout introduced the call by requesting stories on state LGBT data implementation that can be used to help the federal government in whether/how they would include LGBT data questions on national surveys.

Among the reasons LGBT data has been left off national surveys, several myths circulate on why exclusion continues. For instance, surveyors fear higher refusal rates, break-off rates and confusion from respondents taking these surveys.

Current National Surveillance Efforts:

o       Despite failed efforts to include GLBT questions on the national Census, researchers are studying same-sex partner data gathered from the survey.

o       DHHS is including LGBT health measures on their major health survey (National Health Institute Survey : NHIS) but that is still within the works.

o       The National Adult Tobacco Survey includes multiple questions on LGBT as a singular question.

o       CDC sponsored survey on LGBT data in the United States in “Sexual behavior and selected health measures: Men and women 15–44 years of age

o       A group of researchers and advocates are working on a document for how gender identity questions can be added to national surveys (i.e. education, health.)

State Experiences

  • New York: City Health Department in NYC had a strong experience with adding sexual orientation and gender identity

o       Unexpected positive outcome: Mainstream scientists are excited about looking at LGBT data because they care about health disparities showing that LGBT data collection is not just a minority issue.

o       Positive Outcome: Multiple surveys point to LGBT data

  • California: California Health Interview Survey (CHIS) has included sexual orientation (not gender identity)

o       Barrier and Solution: When respondents are confused, the protocol is to reinforce the need for complete understanding of demographics/disparate populations and that no one is forced to answer the question.

  • Illinois – YRBS – does not include LGB, but Chicago does include a question asking folks “Which best describes you ‘gay’, ‘bisexual’, ‘lesbian’, ‘not sure”
  • New Mexico – NM has made a lot of progress in adding LGBT measure

o       Strides: “Sexual orientation” was added to both the Adult Tobacco Survey (ATS) in 2003 and the Behavioral Risk Factor Surveillance System (BRFS) in 2005.  Since 2009, both surveys added a question including “transgender”.

o       Barriers and Solutions:

  • A few participants questioned why LGB was asked, but confusion why that was added was explained.
  • In early years, there was confusion from 65+ year old individuals about LGB questions, so NM limited how many seniors received that question as many responded with “I don’t know.”
  • Lack of youth data is a major gap that needs to be filled. Since 2005, advocates and researchers have been proposing that “sexual attraction” to be added to the Youth Risk Behavior Surveillance System (YRBS) as no LGBT questions are currently asked on this major survey for youth.

o       Positive Outcome: NM APHA data paper from 2003-2009 showed refusal rates of sexual orientation question in BRFSS to only be .8- 1.8% which compares with refusal rates for other categories like 4.1-4.5% on household income.

  • Ohio – Led focus LGBT focus groups with reports on what was asked as well as transcripts for the groups. Another report is here.

o       Barrier: There weren’t enough respondents

Resources on LGBT data collection and best practices

Next Steps:

  • Please send emails or comment here with experiences of “Lessons Learned” at lgbttobacco@gmail.com.
  • We are looking for folks who have information on who has adult tobacco, YRBS, BRFFS, Quitlines
  • Another call continuing discussion will be announced.
  • A separate call on program data may be useful for folks who are looking for assistance on including LGBT data themselves.

Published by Emilia Dunham, MPP, MBA

Emilia Dunham is currently a Project Manager at MassHealth/Department of Public Health, and formerly the Project Manager of the Life Skills project at The Fenway Institute, an HIV intervention study for young transgender women. Emilia worked at Fenway for 7 years, first as a Quality Control and Regulatory Assistant mainly involved with biomedical HIV prevention trials, before serving as the Program Associate for The Network for LGBT Health Equity, a network instrumental in many national LGBT health policy improvements. She is also involved with the Massachusetts Transgender Political Coalition, serving as a Steering Committee member and the Policy Committee Co-Chair, an organization largely responsible for the recent passage of the Trans Rights Bill. Additionally she serves as a member of the Massachusetts Commission on Gay, Lesbian, Bisexual and Transgender Youth, Co-Chair of the Recommendations Committee. Emilia received a Bachelor’s degree from Northeastern University. There she served as President of the LGBTQ student group where she planned programs such as Pride Week, Transgender Day of Remembrance, and AIDS Week. In addition, she advocated for LGBTQ inclusive policies and programming on campus such as a Gender Neutral Housing program, an LGBTQ Center and the expansion of Women’s Studies to Women, Gender and Sexuality Studies. Emilia recently earned a Master of Public Policy and Master of Business Administration in health policy and management from the Brandeis Heller School School for Social Policy and Management.

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