This June, millions of people who identify as queer and their straight allies will march in a pride parade. Pride parades and festivals, which typically take place in June to commemorate the 1969 Stonewall Riots, are opportunities to celebrate LGBTQI (lesbian, gay, bisexual, transgender, queer, and intersex) culture and to demonstrate for rights.
Recent years have brought more reason to celebrate, including the June 2015 Supreme Court ruling that legally established the right to same-sex marriage nationwide. But even during times of celebration, LGBTQI people continue to face discrimination in the workplace, in the housing market, and in the health care system.
They are still more likely to be unemployed and less likely to have health insurance than their heterosexual peers. And LGBTQI youth are overrepresented among the homeless youth population and are at higher risk for substance use, depression, suicide, and chronic illnesses, including cancer and cardiovascular diseases, compared with the general population.
To make meaningful advances in the quality of life and health for LGBTQI Americans, we need high-quality data to help policymakers, researchers, advocates, and service providers understand the issues they face.
Some efforts are already under way to improve data on LGBTQI people, but we have a long way to go
Several national datasets include information on sexual orientation and, to a lesser extent, gender identity, including these:
- Behavioral Risk Factor Surveillance System (BRFSS), which added an optional module with questions about sexual orientation and gender identity in 2014; in 2016, 25 states and Guam implemented the module, five more than in 2015
- National Health and Nutrition Examination Survey, which includes questions about sexual orientation but not gender identity
- National Health Interview Survey, which includes questions about sexual orientation but not gender identity
States, counties, and cities are starting to collect data about sexual orientation and gender identity.
Earlier this month, DC councilmembers introduced the Lesbian, Gay, Bisexual, Transgender, and Questioning Health Data Collection Amendment Act of 2018, which would require two city agencies to field an annual survey and use the results to tackle health disparities for LGBTQI residents.
At the Urban Institute, the Health Reform Monitoring Survey has collected data about lesbian, gay, and bisexual adults since 2013. Results from this survey have allowed researchers to observe trends in health insurance status among this population, including a dramatic decrease in uninsurance after the passage of the Affordable Care Act and an increase in same-sex marriages.
The California Health Interview Survey has collected sexual orientation data since 2001, and in 2015, it was the country’s first state-level survey to use a two-step strategy to identify transgender respondents. Californians who answer the survey are first asked about the sex assigned to them on their birth certificate and then asked whether they currently identify as male, female, or transgender.
Despite progress toward collecting data on the LGBTQI population, there is still a long way to go. In 2017, the US Census Bureau withdrew a previous announcement that it would add questions about sexual orientation and gender identity to the 2020 Census.
Ultimately, the Census Bureau reported it would distinguish between same-sex and opposite-sex households. But this will fail to capture many LGBTQI people, including those who don’t live with a partner.
States need more data to create evidence-based solutions that meet residents’ needs
LGBTQI people are not a monolith. They come from diverse ethnic, racial, socioeconomic, educational, and religious backgrounds. Better data will allow us to learn more about different populations under the LGBTQI umbrella and will help states craft strong, evidence-based policies to meet varied needs.
The DC proposal to collect data about the LGBTQI residents is a step in the right direction. And states implementing the BRFSS optional sexual orientation and gender identity module will make huge strides toward comprehensive, standardized datasets.
This Pride Month, let’s celebrate the improved well-being of LGBTQI people while calling attention to the need for more data to inform evidence-based policies and interventions.