Daylighting data on the LGBT community

When it comes to finding good data about the lesbian, gay, bisexual and transgender community, such as health statistics on certain ailments or accurate population counts for a specific jurisdiction, journalists, researchers and policymakers are still living in the Dark Ages.

Having covered the LGBT community now for 16 years at San Francisco's main LGBT newspaper, the Bay Area Reporter, I am often stymied in my efforts to answer basic questions that would be routine queries for most other reporters.

For instance, at least every two years there is an outcry that rising housing costs are depleting the city's Castro district of its gay residents, who have called the neighborhood home since the 1970s. But there is no way to confirm this with data, as the U.S. Census does not count LGBT individuals or track where they are moving to and from by ZIP code.

While LGBT advocates and health officials warn about certain diseases that are prevalent amongst the LGBT community, it can be difficult to find credible data to prove their assertions. Most studies done in this area of research are conducted with small sample sizes that often are skewed to white males and overlook women or people of color. Bisexuals and transgender people are likely to be entirely missing from the data or too few to make the findings relevant to a broader population.

Eight years ago LGBT advocates and community members began speaking out about the need to include questions about sexual orientation and gender identity (SOGI) on the decennial census forms in 2020. (To date, the only such information to be gleaned from the census is about same-sex married couples, which it now tracks and is expected to continue to do so. As for SOGI questions, they won't be added until the 2030 census at the earliest.)

In San Francisco, an LGBT aging policy task force created in 2012 called on city officials to do a better job of collecting demographic data on its LGBT residents. It sparked the passage of local legislation that now requires the city's health and social service agencies to include SOGI questions on their forms and surveys.

The local law was then picked up at the state level and enacted by legislators and the governor in 2015. California agencies focused on health and social services have until July of 2018 to carry out the legislation, with additional agencies expected to follow suit in 2019.

During the last four years there has also been movement at the federal level to daylight LGBT data in national surveys and studies. In 2013, the Centers for Disease Control and Prevention began asking about sexual orientation and gender identity in its Behavioral Risk Factor Surveillance System, one of the world's largest health surveys.

And last fall the National Institutes of Health designated sexual health minorities a health disparities population, opening the door for more research into the LGBT community's health risk factors. The U.S. Department of Health and Human Services has a detailed webpage covering how it has been addressing the issue of LGBT data collection.

My California Health Journalism Fellowship project looked at what has been the experience of those agencies already collecting LGBT data, and in particular, what issues arose in asking such questions and how did they address them. I also inquired with public agencies in San Francisco and Sacramento how they are preparing to collect LGBT demographic information going forward.

What I learned from working on my fellowship project is there is a growing concern about the lack of LGBT data collection not only in California, but across the country and globally. There is also a wealth of resources that has been developed to assist in the inclusion of SOGI questions on forms and surveys.

The Gay and Lesbian Medical Association a decade ago developed guidelines on how to ask, and where to ask, patients SOGI questions during medical intakes and other clinical settings. It is not enough to ask someone what their sexual orientation is; they also need to be asked what sex they were assigned at birth and what their gender is now in order to collect useful SOGI data.

The Williams Institute, an LGBT think tank at the UCLA School of Law, focuses on LGBT demographic research and routinely publishes some of the best data about the LGBT community. It also regularly hosts online seminars about how to include and ask SOGI questions, several of which I was able to incorporate into my reporting for my three-part fellowship series.

Two other resources I found invaluable to reporting for my fellowship were the California LGBT Health & Human Services Network, a coalition of 60 organizations across the state, and PRIDEnet: A Participant-Powered Research Network of Sexual and Gender Minorities based at UC San Francisco. It is involved in a national LGBT health study called The Pride Study.

To illustrate the insights LGBT advocates, health officials, and policymakers gain when demographic information about the LGBT community is collected, I focused on the growing research being done on LGBT retirees and the unique challenges they can face as they age in retirement. The Aging with Pride: National Health, Aging, and Sexuality/Gender Study, the first national study of LGBTQ adults 50 years and older that the National Institutes of Health first funded in 2009, is providing a wealth of data and insight into numerous aging issues within the LGBT community.

LGBT people increasingly no longer live in the shadows. They are coming out of the closet at younger ages and in increasing numbers in more conservative parts of the country. And their desire to be counted is only growing stronger. Thus, the policy debates about how to best do that aren't going to fade anytime soon. And the LGBT community's demands for increased funding for services to address their health needs and well-being are set to grow more pronounced. It is an ongoing story I expect to be covering well into the future.