One of the core beliefs in the public health sector is that you must be counted to matter. Counting and analyzing cases is how we know who is more likely to develop cancer or heart disease. It is how we know if an environmental contaminant is affecting the residents of a specific community. With COVID-19, it is how we knew that older adults were more vulnerable and that people in some neighborhoods were more likely to be vaccinated than others. This information is essential if we are to respond with targeted, health-promoting information, outreach, and services. But if certain populations are never counted, it isn’t possible to know if they are more or less likely to be diagnosed with preventable illnesses and injuries and, therefore, their health and well-being may suffer.
This gap is what is being addressed in a new report issued by a White House committee, “FEDERAL EVIDENCE AGENDA ON LGBTQI+ EQUITY.” With this report, the federal government provides a guidebook to systematically capturing information on sexual orientation and gender identity (sometimes abbreviated as SOGI in data collection discussions) in order to better inform policies and programs that affect the lives of lesbian, gay, bisexual, and transgender (LGBTQI+) people and their families. And the report is not just focused on health—it also examines the experiences of LGBTQI+ people regarding such matters as housing, educational and job opportunities, and safety.
"The report is a reminder that governmental data modernization is not just about designing the technology that is essential for effective and efficient operations. It's also about being sensitive to the needs of the people and the communities that are affected."
The document begins with a review of the existing—albeit limited—data that indicates that disparities exist. In a 2020 survey, ICF found that the rate of LGBTQ people who reported being sick with COVID-19 was twice as high as that of the rest of the population. A National Public Radio survey found that more than half of LGBT people experience verbal harassment and 16% report discrimination when seeking medical care. The situation is even worse for transgender people, one third of whom report obstacles when seeking health care. In addition, transgender people have a shockingly high unemployment rate three times that of the general population.
But while the existing efforts have identified inequities, more often than not neither sexual orientation nor nonbinary gender identity are captured in government surveys. So, we don’t have the full picture of the health and well-being of LGBTQI+ people. In response, the report identifies the areas where federal data collection could be improved, such as in the scores of surveys overseen by the U. S. Census Bureau and the patient enrollment forms completed at healthcare facilities that receive Medicare and Medicaid reimbursement. Some transformative activities are already underway. For example, the Office of the National Coordinator for Health Information (ONC) is currently overseeing a process known as the U.S. Core Data for Interoperability which will likely include an expanded set of SOGI-related questions for use in federally funded programs.
But collecting data on populations who have encountered discrimination and harassment requires a level of care and sensitivity. The report emphasizes that the data collection must be done in a manner that protects the privacy, security, and civil rights of those involved. It offers a variety of guidelines including that responses to questions about sexual orientation and gender identity should be voluntary and should not warrant additional documentation or physical examination for verification.
While encouraging immediate action, the report also highlights that additional research is needed. Thirteen overarching questions are highlighted in the areas of “Health, Healthcare, and Access to Care,” “Housing Stability and Security,” “Economic Security and Education,” and “Safety, Security, and Justice.” And among the specific areas needing ongoing attention are the optimal ways of gathering data about gender identity that includes nonbinary response options.
The report is a reminder that the governmental data modernization process is about more than simply designing the technology that is essential for effective and efficient operations. Among other things, it’s about ensuring that the conditions exist for the submission and analysis of data that have not been captured in the past. This requires technical skills, awareness of social and environmental settings, sensitivity to the unintended consequences that might arise, and ongoing research and evaluation of the tasks undertaken. The new federal report provides insights into each of these requirements.