Public health is missing crucial data on LGBTQIA+ people. It’s not hard to collect

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. That’s why the recent recommendation by the Biden administration’s Covid-19 Health Equity Task Force that federal, state, local, Tribal, and territorial health departments collect data on sexual orientation and gender identity (SOGI) data is a big deal.

Two years into the pandemic, there are myriad reasons to hypothesize that LGBTQIA+ people are experiencing higher rates of Covid-19 infection, illness, hospitalization, and death than their heterosexual and cisgender peers. They are twice as likely to work in frontline professions such as retail and food services, health care, and education. They also experience higher rates of chronic conditions such as cardiovascular disease, asthma, and diabetes that can exacerbate Covid-19 symptoms, and they tend to engage in behaviors that can increase the risk of complications from Covid-19, such as smoking and vaping, at higher rates than the general population.

Yet little is known about how LGBTQIA+ people are being affected by the pandemic because few public health departments are collecting and reporting this information. In its final report, the Covid-19 Health Equity Task Force notes that federal and state public health departments had not released any pandemic-related information about the “experiences of LGBTQIA+ people” until August 2021, when an analysis of U.S. Census Bureau survey data showed that LGBT adults reported higher rates of food insecurity than heterosexual and cisgender adults.

As I write this, only Pennsylvania, Rhode Island, Nevada, Oregon, and Washington D.C. have taken steps to collect sexual orientation and gender identity data in Covid-19 testing and treatment, while California is collecting SOGI data among those who test positive for Covid-19. But none of these jurisdictions have publicly reported these data. Massachusetts has added fields to its infectious disease database for sexual orientation and gender identity data, but has yet to require labs, pharmacies, or hospital systems to track this information among people seeking testing, treatment, or vaccinations for Covid-19.

The U.S. has decades of experience collecting demographic data about race and ethnicity. While data collection on sexual orientation and gender identity is less widespread, when asked, most people are willing to provide this information. Without additional guidance from the Biden administration, however, the recommendation to collect data on sexual orientation and gender identity to understand the impact of Covid-19 on LGBTQIA+ people — and thus provide a more complete picture of its effects on the country — is likely to go unheeded.

The first federal policy encouraging health care systems to collect data on sexual orientation and gender identity wasn’t enacted until 2015, when the federal Office of Heath Information Technology required these fields in electronic health records certified for use in the Meaningful Use incentive program. A year later, the Health Resources and Services Administration required federally funded health centers to submit SOGI data as part of their annual Uniform Data System reports. During the first year of reporting, health care centers failed to report sexual orientation data on 77% of patients and gender identity data on 62% of patients. The reasons ranged from staff concerns that patients would be made uncomfortable by questions about sexual orientation and gender identity to a lack of data fields in electronic health records to record the information.

Individuals of all races and ethnicities living in urban, suburban, and rural locales are comfortable answering questions about sexual orientation and gender identity. In fact, they’d rather field questions from clinicians about their gender identity than their income. Thanks to the Meaningful Use requirement, all electronic health record systems have been required to have the ability to record SOGI data since 2015. And ongoing research beginning in 2013 and led by Fenway Health in Boston, where I work, has resulted in widely available best practices and supportive guidance for collecting information about sexual orientation and gender identity.

The first step in ensuring that the Covid Task Force’s critically important recommendation to collect SOGI data is taken up by state, local, Tribal, and territorial health departments is for the Centers for Disease Control and Prevention to share guidance on how to do it, and encourage or require collection and reporting of this information in Covid-19 testing and vaccine uptake. The federal government can set an example of best practice by adding SOGI questions to the demographics portion of its Covid-19 Case Report Form.

The second step is for Covid-NET, a network of 100 large hospitals chosen to represent the U.S. population, to begin collecting information on sexual orientation and gender identity. Racial disparities in Covid-19 health outcomes were first documented by Covid-NET, which found that people who are Black, American Indian, Alaska Native, Hispanic, Asian, or Pacific Islander were more likely to have Covid-19-associated hospitalizations, ICU admissions, or in-hospital deaths compared with non-Hispanic white individuals.

If LGBTQIA+ people are experiencing disparities in Covid-19 health outcomes — as researchers widely believe — it will also be important for the National Covid Cohort Collaborative to add sexual orientation and gender identity data to its Covid-19 Clinical Data Warehouse Data Dictionary. Some of the most actionable research on racial disparities in Covid-19 testing and treatment have come from this collaborative, which is a project of the National Center for Advancing Translational Sciences.

The early days of 2022 are an indication that the pandemic is not going away anytime soon. The country will need to deploy every tool at its disposal to defeat Covid-19. That includes devising meaningful interventions for those who may be more vulnerable to Covid-19 infection, hospital admission, and death than the general population. While there is every reason to believe that LGBTQIA+ people are among the more-vulnerable population, we don’t know for sure, as I argued recently in the American Journal of Public Health.

The Biden administration’s Covid-19 Health Equity Task Force has taken an important first step in getting the answers we need by recommending that sexual orientation and gender identity data be collected. Ways to implement this recommendation are available. Now it’s up to public health departments, the CDC, hospital systems, pharmacies, and labs to follow through.

Sean Cahill is the director of health policy research for the Fenway Institute at Fenway Health in Boston, affiliate associate clinical professor of health sciences at Northeastern University, adjunct associate professor of the practice in health law, policy and management at Boston University School of Public Health, and serves on the Massachusetts Special Legislative Commission on LGBT Aging.