Guest Opinion: SOGI data needed in COVID pandemic
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Are Black LGBTQ people disproportionately vulnerable to COVID-19? Are they more hesitant about getting vaccinated? What about LGBTQ immigrants, or older LGBTQ people? Unfortunately, we have little public health data with which to answer these important questions.
A year into the COVID-19 pandemic, we still lack basic information on how it is affecting LGBTQ people. This need not be the case. Sexual orientation and gender identity (SOGI) data collection is fairly wonky, but super important. If public health systems don't count us, we don't count.
While there are still problems and several lawmakers have requested an audit of the state health department, California has been a leader on collecting SOGI data in health care settings, and since late 2020 in COVID-19 testing and care outcomes. California is one of five jurisdictions that are collecting SOGI data in COVID-19, along with Oregon, Nevada, Pennsylvania, Rhode Island, and the District of Columbia. Hopefully, more states will follow soon.
The federal government has not yet taken steps to encourage or require the collection and reporting of SOGI data in COVID testing, care, and vaccination. (And California is not collecting COVID vaccination data.) Given the Biden-Harris administration's commitment to LGBTQ equality and health equity, I am hopeful that they will take action soon to rectify this.
There are many reasons why LGBTQ people are disproportionately susceptible to infection by the novel coronavirus. LGBTQ people are twice as likely to work in front-line professions such as retail, food services, health care, and education. LGBTQ people are disproportionately poor, especially people of color, bisexual women, transgender people, and older adults.
Many LGBTQ people inhabit urban areas, live in dense congregate housing, and rely on public transit, making social distancing difficult.
LGBTQ people, especially older adults, are more likely to have chronic conditions such as diabetes, asthma, and cardiovascular disease, and risk factors like smoking and vaping, that may put them at risk for complications from COVID-19.
Recently a group of LGBTQ health policy advocates wrote to the Association of State and Territorial Health Officers asking state health directors to include LGBTQ and intersex people in their vaccine dissemination plans. We did this because, as a result of stigma and discrimination in health care, LGBTQ people — especially people of color and transgender people — experience medical mistrust, which could affect willingness to get the vaccine. Many older people experience medical mistrust because in their youth the medical establishment pathologized same-sex behavior and gender diversity, subjecting them to shock therapy or worse. Intersex people mistrust the medical community due to abuses many experience in childhood and adulthood. Lesbian and bisexual women are less likely to access routine, preventive care, which could cause them to access vaccination at lower rates. We need affirmative outreach to LGBTQI people to ensure that they access vaccination equitably.
While we don't have good public health data yet on LGBTQ people and COVID, we are starting to get survey data. The Williams Institute, a think tank at UCLA School of Law, recently published an analysis of Axios/Ipsos panel survey data and found that LGBTQ POC were more likely than straight, cisgender POC to test positive for COVID-19, and twice as likely to test positive for COVID-19 than LGBTQ White people. LGBTQ people of all races were more likely than non-LGBTQ people to report being recently laid off from employment. A recent analysis in the journal Vaccines of online survey data found that Black and Native American gay men and other men who have sex with men, or MSM, in the U.S. were less willing than white MSM to get vaccinated for COVID-19, while Asian American MSM were more likely to get vaccinated. There was no significant difference between Latinx MSM and White non-Hispanic MSM.
Despite excellent state laws written by Assemblyman David Chiu (D-San Francisco) and gay state Senator Scott Wiener (D-San Francisco), California has struggled to collect and report SOGI data in COVID-19 testing and care. As the Bay Area Reporter has reported, testing labs say that because SOGI is not included in the Health Level 7 International's main health information technology standards, that they cannot transmit SOGI data collected in testing to the state health department. I hope that HL-7 can quickly update its standards to include SOGI. Usually this process takes a lot of time, but HL-7's CEO told California leaders that they are working on it.
This interaction highlights the connection between health data collection efforts and the need for quality SOGI data standards in health information technology systems like HL-7. Since 2011 a number of federal government agencies and private entities like the Joint Commission have encouraged or required the collection of voluntary SOGI data to improve quality of patient care. The LGBTQ+ community must advocate for better SOGI standards to replace the outdated ones in the SNOMED-CT system (which still use the terms "homosexual" and "transsexual"), and get them adopted by HL-7's Fast Healthcare Interoperability Resource (FHIR), and by the U.S. Core Data for Interoperability.
It's critically important that we keep up with the changing architecture of health IT systems in order to ensure increased collection and use of SOGI data to understand LGBTQ health disparities, and how they intersect with racial/ethnic, immigrant, rural and other disparities.
Sean Cahill, Ph.D., is director of Health Policy Research at the Fenway Institute in Boston.
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