The Case for SOGI Data


Early last year, sexual orientation and gender identity (SOGI) questions were quietly removed from two federal surveys, the National Survey of Older Americans Act Participants and the Annual Program Performance Report for Centers for Independent Living. This move was a huge loss for both the LGBTQ+ and research communities.

“It’s a big deal to make this change,” Michael Adams, CEO of Services and Advocacy for Gay, Lesbian, Bisexual and Transgender Elders, or SAGE, said. “What this is about is stripping out an entire population.”

Having only been in circulation since 2014, the collection of SOGI data was described as “a pilot test” with an “insufficient” sample size by Kelly Mack, a spokeswoman for the Administration for Community Living, of the Health & Human Services (HHS) division, which oversees the surveys. LGBTQ+ advocates are incredulous of this claim.

The National Health Interview Survey (NHIS), which the HHS relies on to monitor trends in illness and disability and to track progress toward achieving national health objectives, has collected ethnicity data of its respondents for almost 20 years. This has resulted in a wealth of minority health data. For example, we know that older African Americans and Native Americans have the highest disability rates in America, followed by older Hispanic/Latinos. What we don’t know is what percentage of those disabled populations identify as LGBTQ+. This is particularly notable as the tracking of these disability trends, which often project future disability rates, are especially important for the shaping of public policy.

The implications of the erasure on the LGBTQ+ patient population are stunning. As of 2000, there were more than 2 million older adults that identified as gay, lesbian, or bi-sexual. This number is on track to more than double, with a likely population of over 6 million LGBTQ+ seniors by 2030. Can you imagine? 6 million minority Americans becoming more reliant on physician care, with little to no data to support their aging transition, or to support the doctors who will care for them. But what can be done about this?

“The collection of SOGI data is important for understanding potential disparities and for building mutual trust and respect among healthcare providers, researchers, and our LGBTQ community,” says Dr. Jason Flatt, an Assistant Professor at UCSF’s Institute for Health & Aging.

The unique stressors facing the LGBTQ+ population are sure to create health trends unique to the population. The first step to identifying, and eventually treating those trends, is including SOGI-based questions, not just in federal surveys, but in all medical forms. We must modernize what we consider to be standard patient data to be inclusive, and to reflect our expanded understanding of the human condition.

Standard Sexual Orientation and Gender Identity Questions as identified by the The Williams Institute are:

What is your current gender identity? (Check all that apply.)

  • Man
  • Woman
  • Trans male/Trans man
  • Trans female/Trans woman
  • Genderqueer/Gender non-conforming
  • Another identity: ____________________________

What sex were you assigned at birth, on your original birth certificate?

  • Male
  • Female

How would you describe your current sexual orientation? (Check all that apply.)

  • Asexual
  • Bisexual
  • Gay
  • Lesbian
  • Queer
  • Questioning
  • Straight/Heterosexual
  • Not listed above (please write in): _____________________

This is a highly emotional issue, with passionate arguments coming from both sides. But we must think of and understand our patient populations, all of them, in order to best serve them. In this case, a small but inclusive change could have a massive impact for generations of LGBTQ+ Americans.

Special thanks to Dr. Jason Flatt of the Institute for Health & Aging at University of California San Francisco for providing his unique insight on this matter.

Originally published in Orlando Medical News