The Department of Health and Human Services last week announced a seemingly small change in the way it will collect population health data going forward. If you’ve ever participated in some of the government’s extensive efforts to track the nation’s health, such as the National Health Interview Survey, you’ve probably answered a question or checked a box about your race and gender.
Come 2013, government surveys will begin asking for the first time about another characteristic: sexual orientation. And for researchers and advocates of the lesbian, gay, bisexual and transgendered (LGBT) who’ve been clamoring for this data for years, the change is big news.
“It’s a huge deal,” said Judith Bradford, co-chair of the Fenway Institute in Boston and director of its Center for Population Research in LGBT Health. “It’s hard to think of one thing that would be any more important to us than basically to have billions of dollars handed at [LGBT health].”
Until now, though, there has been little reliable, population-wide data on the gay and transgendered community. And this matters because of a rule well known to policy wonks: If the government doesn’t have data on you, your community is effectively invisible when it comes to doling out federal resources. Government also can’t tackle problems if there’s no data to suggest they exist.
“You can’t make your case that you have needs,” Bradford said. “Until you can do that, it’s hard to reap the benefits of social acceptance and government support.”
The announcement is part of a broader goal embedded in last year’s health reform bill for the government to collect more fine-grained data on minority communities to help identify and ultimately address disparities in access to care and health outcomes. Certain minority communities, for example, are known to be uninsured at higher rates than the general population and to have higher rates of chronic illnesses.
Jesse Moore, a spokesman for HHS, said the government has been focused on evidence-based strategies to narrow health disparities. But, in the case of the LGBT community, the government hasn’t even had the evidence it needs to design those strategies in the first place.
“We can’t put the cart before the horse when trying to eliminate health disparities,” Moore said. “We need to first thoroughly understand who we’re serving and all of their unique health challenges and needs.”
Well known are the community’s challenges in combating HIV. But there’s much more, Bradford said, that researchers also wish they knew.
“One of the most important things that we will begin to learn more about is what happens to LGBT people as we get older, how do our family lives and our social lives change?” Bradford said.
Some research suggests, for instance, that LGBT people are less likely to have strong family support networks as they age and require more care, given that fewer of them have children and some may have strained relationships with existing family members as a result of their sexual orientation. How will this affect access to care? Are there mental health concerns that come with loneliness in older age?
Bradford also pointed to what’s been perceived as higher rates of obesity among lesbian women. Is this because, as some feminist theorists have suggested, the lesbian community is more accepting of women who don’t have the ideal body type? Or are there other behavioral and environmental factors?
Researchers haven’t been able to systematically study these questions until now for a host of reasons. Because the community is small, it’s harder to study. Researchers must know how to ask questions about sexual orientation in a way that prompts honest responses. Today, Bradford said, nonresponse is generally no longer an issue, although low-income and Hispanic populations in particular remain reluctant to answer questions about sexual orientation on health surveys.
Then there is also another explanation for the lack of data to date: politics.
But public opinion about the LGBT community has slowly been shifting — shortly before last week’s vote in New York to legalize same-sex marriage, Gallup for the first time measured majority support for the idea among the public — and political will to address the community’s needs has shifted with it.
HHS’ announcement follows other seemingly small changes in government policy with major implications for the LGBT community. The State Department last December announced that it was making passport applications gender neutral — with references to “parent one” and “parent two” and not just “mother” and “father.” Federal rules have also been changed in the past year to require hospital visitation rights for same-sex couples and to prohibit discrimination based on sexual orientation in federal housing assistance.
Unlike New York’s vote last week and the State Department’s earlier passport announcement, there’s been little vocal objection to HHS’ plans. That may be another great benefit of wonky data collection — it’s hard to argue why the government should not do this.
“Government is at its best,” Moore said, “when we are providing the people who can help with the information they need.”