Why HHS collecting LGBT health data is a big fucking deal

The Department of Health and Human Services’ (HHS) announcement yesterday that they plan to begin including sexual orientation and gender identity in health data collection probably doesn’t sound that exciting unless you’re a total data nerd. But it’s actually a really big fucking deal.

The Affordable Care Act (health care reform) gave HHS Secretary Kathleen Sebelius discretion in collecting data about health disparities. Under the new plan, “HHS will integrate questions on sexual orientation into national data collection efforts by 2013 and begin a process to collect information on gender identity.”

There is a lack of data on LGBT folks, who we do know face disparities in health and access to health services. Without federal health data, it’s practically impossible to direct federal government resources to focus on health inequalities. Including sexual orientation in data collection will go a long way towards showing what LGB folks face. This data will make it possible to name and quantify real world problems, and to then direct government resources towards addressing them.

The problem is especially stark for transgender and gender non-conforming folks, and the potential for positive change is huge. There is almost no data about our communities. The recent survey released by the National Center for Transgender Equality (NCTE) and the National Gay and Lesbian Task Force about discrimination faced by trans folks is an important first step. But this was primarily an online survey folks had to opt in to themselves, not the broad sort of data collection HHS can make happen.

The survey shows massive inequality in health care access for trans and gender non-conforming folks. 19% were refused health care access, 28% were harassed in medical settings, and a full 50% had to teach their providers about trans health care.

Collecting data about trans folks is not easy. We’re a relatively small community, we’re spread out, and we’re difficult to reach since we face such immense barriers to access. Just figuring out the right questions to ask is complicated, when you realize language that makes sense to lots of trans folks doesn’t make sense to lots of cisgender folks – so how do you phrase a question that can be included in a general survey? HHS’ efforts to determine best practices for collecting data related to gender identity have the potential to change the problem, creating a body of knowledge about trans and gender non-conforming folks. And with data comes the ability to point to a problem and direct government resources to solving it.

NCTE Executive Director Mara Keisling on why this is so important:

When the federal government starts to count us, we will have the proof of the health disparities we all know exist. 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.

Federally created standards for collecting data can go a long way towards increasing the collection of quality data in other areas as well. Kellan Baker of the Center for American Progress explained how the creation of standards can improve private data collection to Metro Weekly:

“There are many large-scale surveys that are fielded by private foundations with the aim of figuring out, ‘Who is the population that we’re seeking to serve? Who needs programs?’ So, every time that we have a federal data source that shows us what these data collection instruments could look like, that helps those entities – those foundations or whoever – to field questions that get a better sense of what the LGBT population looks like.”

He noted, “Right now, we’ve got some private surveys that do that – but they do it in a mix of different ways. Everybody asks the question a little bit differently, so the development of standards at the national level helps bring everybody that much closer to painting a coherent picture of the LGBT community.”

Data collection is just the first step towards addressing health inequality, but it’s a big, crucial step. This change in HHS policy could lead to very real, widespread, and absolutely necessary changes in people’s lives.