Six organizations are launching a national study on how COVID-19 impacted the LGBTQ community.
The We Count Collaborative will bring together data from 45,000 LGBTQ patients. It is a joint effort between the PRIDE Study (based at Stanford University on the Peninsula) and five federally qualified health centers: the Los Angeles LGBT Center, the Callen-Lorde Community Health Center in New York, CrescentCare in New Orleans, Howard Brown Health in Chicago, and the Whitman-Walker Institute in Washington, D.C.
Annesa Flentje, who has a Ph.D. in clinical psychology and is associate director of the PRIDE Study, told the Bay Area Reporter that the project, launched in May, is necessary due to the dearth of sexual orientation and gender identity, or SOGI, data that was collected at the start of the pandemic.
"I think one of the reasons it's so important to have this collaborative effort is that LGBTQ+ people haven't been included in a lot of the data about COVID — hardly any of it," Flentje, a queer woman, told the B.A.R. "When we look at communities being extra-impacted by COVID, we aren't able to see what those impacts are for LGBTQ people in particular."
Flentje is also the director of the UCSF Center for Sexual and Gender Minority Health.
As the B.A.R. consistently reported, state and local agencies were slow at the height of the pandemic to implement the collection of SOGI data as required by state and local laws — even though it was projected early on that LGBTQ people would be disproportionately impacted by the pandemic.
"I think the COVID-19 pandemic has shown a light on the real damage that can be done when we don't collect basic demographic information," Flentje said. "The LGBTQ+ community has remained mostly invisible when it comes to not understanding that impact."
This year, the U.S. Centers for Disease Control and Prevention issued a report showing that LGBTQs had higher rates of underlying illnesses related to negative COVID-19 outcomes, which a news release from the We Count Collaborative stated made "data tracking on the virus' health impacts in LGBTQ communities is more imperative than ever."
The quintet of health centers is "uniquely positioned," it noted, "to track and report on this data as well as advise on best practices for addressing the health needs of LGBTQ communities."
The 45,000 participants in the study "are people who are engaged with the federally-qualified health centers," Flentje said.
"This collaboration is harnessing the power of electronic records at those care sites," she explained.
Flentje told the B.A.R. that "some data have been collected, [and] some will be in the future." She added that Whitman-Walker would be better able to address the data collection aspect.
Jenn Kwait, Ph.D., a research scientist at the Whitman-Walker Institute, stated in an email to the B.A.R. that the We Count Collaborative is using electronic medical record data from the participating health centers.
"We will create a combined, multi-site, de-identified dataset of patient-level data to explore key questions," wrote Kwait. "The EMR data ... is already, or will be, collected as part of clinical care. We will be collecting additional data through existing and future surveys conducted via the PRIDE Study."
Some of the data will come from the PRIDE Study itself, Flentje said.
"The PRIDE Study has really detailed information from 6,000 LGBTQ people all over the country about how COVID has impacted them financially, socially and health-wise," Flentje said. "By collaborating with the PRIDE Study, we can look in-depth at what's in those electronic records."
Flentje said that the researchers hope to find out how vaccination, in addition to contracting the virus, impacted the community.
"It's not just COVID," Flentje said. "It's really focusing on LGBTQ+ people and finding out how their health was impacted in that period of time."
Flentje said that once results are in, policymakers will have something to refer to when seeking to provide more help to communities hit hardest by the pandemic.
"When you look at the industries impacted, we know LGBTQ+ people are more likely to be employed in those industries," Flentje said. "So, our community will need more in recovery from the pandemic."
The LA center also pointed to the public policy implications in its statement.
"Our pooled data will allow for a novel and robust analysis of COVID-19's impact on access to health care for vulnerable LGBTQ clients," stated Dr. Robert Bolan, the LA center's chief medical officer. "The capability to collect and report on data trends across our geographically diverse sites will inform vital public health policy around prevention, education, and provision of services for LGBTQ communities."
Updates throughout the process can be found on the website of the Whitman-Walker Institute.
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