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Paper calls for sexual orientation and gender identity data collection in COVID-19 testing

data collection

BOSTON, August 13, 2020—An editorial published in The American Journal of Public Health calls for the routine inclusion of sexual orientation and gender identity (SOGI) data in the demographic information collected for COVID-19 testing. Titled “Sexual and Gender Minority Health in the COVID-19 Pandemic: Why Data Collection and Combatting Discrimination Matter Now More Than Ever,” the editorial was authored by researchers at The Fenway Institute at Fenway Health and adds to a growing body of literature calling for the collection of SOGI data in health care.

“The COVID-19 pandemic has sparked an important conversation about racial and ethnic health disparities, but the COVID-19-related risks to sexual and gender minorities have received almost no attention,” said editorial lead author Sean Cahill, the Director of Health Policy Research at The Fenway Institute. “We don’t yet know whether Black, Latinx, or Indigenous people who are also lesbian, gay, bisexual, and transgender have worse outcomes from COVID-19 than their straight and cisgender peers. These are critically important questions because the answers might affect the deployment of resources and the development of culturally tailored interventions.”

Only Pennsylvania, California, and the District of Columbia routinely collect SOGI data during COVID-19 testing. California recently announced that it is requiring the reporting of SOGI data along with race/ethnicity and age by health care providers and laboratories within the state. Rhode Island collects information about sexual orientation. Illinois will add a COVID-19 module to its 2020 Behavioral Risk Factor Surveillance System survey, which also collects SOGI data. When these data are made public, they could yield important information about sexual and gender minority populations and COVID-19. Massachusetts has added SOGI fields to the state’s infectious disease data system, MAVEN, but has yet to take any additional steps toward collection of these data, such as encouraging or requiring the reporting of the data by laboratories or testing entities. The federal government is also not encouraging or requiring the collection and reporting of SOGI data in the COVID-19 pandemic, despite requests that it do so.

The editorial asserts that SOGI data collection is necessary because sexual and gender minorities share many of the same risk factors for COVID-19 infection and complications that straight and cisgender Black, Latinx, Indigenous, and other people of color do. These include:

  • Disproportionately higher rates of employment than their straight, cisgender peers in industries where workers have experienced higher rates of COVID-19 infection such as food services, health care, retail, and education.
  • Disproportionately more likely to live in dense, urban areas where physical distancing measures are much harder to maintain, and which have emerged as early COVID-19 infection hotspots.
  • Disproportionately higher rates of health disparities that lead to conditions such as obesity, diabetes, respiratory and cardiovascular disease, and hypertension as compared with their straight, cisgender peers. These health conditions correlate with greater rates of COVID-19-related treatment complications and fatalities.
  • Disproportionately more likely to smoke cigarettes and vape than straight, cisgender people.

The editorial also notes that collecting SOGI data in health care was recommended a decade ago by the Institute of Medicine, the Joint Commission, and Healthy People 2020.

“In the middle of the greatest global health crisis of the century, with the exception of a handful of states and the District of Columbia, we are operating with no knowledge of how COVID-19 is affecting sexual and gender minority populations,” Cahill added. “This is public health malpractice. Our local, state and federal health agencies must, at a minimum, encourage the systematic collection and reporting of SOGI data to understand how sexual and gender minorities are experiencing COVID-19, how SOGI disparities intersect with racial/ethnic disparities, and how to effectively tailor interventions for prevention, testing, contact tracing, and care services.”

Sexual and Gender Minority Health in the COVID-19 Pandemic: Why Data Collection and Combatting Discrimination Matter Now More Than Ever is available online here. [Subscription needed.]

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