Counting All in Our Communities: Sexual Orientation and Gender Identity Data

Our communities are shaped in large part by how we understand the populations who call the places home, often through demographic data. Understanding who lives in our communities through use of data is central to effectively expanding the vital conditions for well-being and justice and ensuring the availability of urgent services when we need them. Governments regularly use demographic data to inform electoral districting, zoning, taxation, and grant and policymaking. Advocacy organizations rely on demographic data to shine a light on community opportunities and needs, raise awareness, and advance policies. Medical providers and researchers depend on demographics for providing the best care and pursuing future cures. Businesses rely on demographic data for geolocating, advertising, and employee recruitment. What happens when populations within a community go uncounted?

The American Journal of Public Health reports, “One of the greatest threats to the health of [LGBTQ+] Americans is the lack of scientific information about their health.” Before 2016, most national, state, and local surveys failed to include sexual orientation and gender identity (SOGI) questions in their questionnaires, leaving substantial gaps in research, resource allocations, and services. Progress to date remains insufficient. Sean Cahill, director of health policy research for the Fenway Institute at Fenway Health in Boston affirms in his article, “the importance of capturing demographic data in health care settings and population surveys can’t be overstated. If a population or group isn’t counted, it may as well be invisible.”

Building Momentum

There have been strides at the federal level to improve data collection for LGBTQ+ people as a means to advance health equity. Healthy People 2030, which sets 10-year data-driven national objectives to improve health and well-being, is calling for more states to collect SOGI through the Behavioral Risk Factor Surveillance System or BRFSS–the nation’s premier ongoing health survey–and other national surveys (see objectives). The Presidential Covid-19 Health Equity Task Force Report is calling for the federal government to fund an equity-centered approach to data collection for LGBTQ+ people and other groups that are often left out of data collection, and for the removal of administrative barriers to data collection for agencies. Civil sector advocates are calling for SOGI collection in electronic health records, insurance applications, research studies, clinical trials, health laboratory tests, and health surveys and across public health surveillance systems and COVID-19 reporting platforms. Through ongoing, routine collection of SOGI we can better understand health and well-being of LGBTQ+ people, inform efforts to improve community well-being, and advance health equity.

Counting All in Our Community

A multi-sector group of stewards in Fox Cities, Wisconsin is making sure all are counted in their region. Imagine Fox Cities is a growing coalition of local change-makers working to co-create a thriving region for residents of today and generations to come. In 2018, Imagine Fox Cities started by gathering a diverse group of members and designing how they could take the pulse of the region. They then set out to listen using multiple approaches over a six-month span. They administered the well-being survey among nearly 3,000 community members and, with the help of 28 facilitators, convened 81 small group conversations. The community voices outlined a living vision to serve as a compass for shaping the region. One of the four pillars that emerged is that the Fox Cities be a place “Where All Belong”.

In 2019, their Well-Being Survey demographic questions included a gender identity question that allowed for respondents to select male, female, non-binary, or no response. Through the process of community conversations and well-being data collection, the Imagine Fox Cities team received feedback from the LGBTQ+ community that the demographic information collected did not allow for the full spectrum of representation. Committed to the pillar that all belong, the 2021 Well-Being Survey expanded the sexual orientation, gender identity, and variations in sex characteristics (SOGISC) questions for a greater understanding of who is suffering, struggling, and thriving across the region. Imagine Fox Cities released their 2021 Well-Being data findings in May. The Imagine Fox Cities findings reinforce the need to collect data for all and demonstrates what’s possible when communities commit to creating places for all to thrive.