The state's auditor has faulted the California Department of Public Health for being sclerotic with its efforts to collect LGBTQ demographics and criticized the agency for having inconsistent policies on how local health officials should be gathering such information. In a report released Thursday, the auditor suggested lawmakers need to take additional legislative steps to address the ongoing issues with the collection of sexual orientation and gender identity data.
"The lack of consistent SOGI data collection procedures, and ultimately the low number of Public Health forms that currently collect SOGI data, indicate that changes to state law may be warranted to compel more consistent and useful SOGI data collection practices," concluded California State Auditor Grant Parks in an April 27 letter he submitted to state leaders.
Titled "The California Department of Public Health: It Has Not Collected and Reported Sexual Orientation and Gender Identity Data as State Law Intended," the 45-page report detailed myriad problems with the state agency's SOGI data efforts. Out of 129 forms used by CADPH, 105 were exempted from collecting SOGI data because a third party, such as a local health jurisdiction, oversees them, found the audit.
"This exemption severely limits the amount of SOGI data the department is required to collect," Parks noted in a fact sheet accompanying his report.
Even with the 24 forms that are required to collect SOGI data, the auditor found only 17 "do so in a complete manner." Parks' report also noted that "because of resource and technical limitations," CADPH is unable to export the SOGI data it collects for over 100 of the 128 reportable disease conditions to an electronic database it oversees.
"Public Health has only made SOGI data available to the public from 17 of the forms we reviewed, and it has not reported directly to the Legislature any SOGI data from the forms we reviewed," noted Parks.
As the Bay Area Reporter has noted in numerous articles over the years, SOGI data collection remains woefully inadequate and plagued with technical problems at every level of government. Even in San Francisco, where the city's public health department has been on the forefront of LGBTQ health issues, the local agency has been criticized for its inability to collect the SOGI data of the people it treats and provides services to across its multiple health centers and programs.
San Francisco officials and state lawmakers nearly a decade ago had mandated that health officials begin collecting SOGI data. But almost immediately the efforts ran into problems, from how to word the questions asked of patients to needing to update the electronic data record systems health agencies use so the SOGI data could be entered.
Outside of LGBTQ circles, the issues impeding SOGI data collection had largely flown under the radar until the COVID pandemic hit in 2020. The global health crisis brought to the fore just how blind health officials remain about the needs of LGBTQ people.
Despite a California law signed by former governor Jerry Brown that had mandated the state's departments of health care services, public health, social services, and aging begin gathering SOGI data in 2016, state health officials did not know how many LGBTQ residents of the Golden State were infected with the deadly coronavirus when it began ravaging the state three years ago. To this day, no such data is available.
Nor is it known how many LGBTQ people died from COVID or have gotten vaccinated for it. The lack of such data persists despite state lawmakers adopting a bill in 2020 requiring health officials to collect it.
Fed up with the situation, a number of LGBTQ state lawmakers in 2021 had called for an audit of the SOGI data collection efforts. Among them was gay state Senator Scott Wiener (D-San Francisco), who has been a vocal critic about the lackluster LGBTQ demographic data collection in California for the last three years and authored the 2020 bill requiring SOGI data collection pertaining to communicable diseases.
In a statement Wiener called the audit findings "extremely concerning" and renewed his demands on health officials that they do a better job on SOGI data collection.
"The Department of Public Health continues to use an overly narrow approach to SOGI data collection, which prevents us from understanding the full health needs of the LGBTQ community," stated Wiener. "The Department needs to institute a centralized, comprehensive approach to collecting this data, update its data collection and analysis systems, and require data collection from third parties. I'm seriously considering legislation to implement the Auditor's recommendations."
Speaking to the B.A.R. Thursday afternoon, Wiener called the auditor's report "pretty extraordinary." He also said it makes clear that state lawmakers do need to introduce a bill to ensure that every single form and survey the state health agency is using asks the SOGI questions.
"This was so unequivocal and also very clear that whatever the legal requirements are, that CDPH has made a decision not to seek comprehensive data on sexual orientation and gender identity," said Wiener, adding he was surprised to learn just how few of the agency's forms include the SOGI questions. "There is nothing preventing them from doing that; they have decided not to include it. That is a huge problem."
In a response to Parks dated April 7 and released publicly Thursday, state Public Health Officer Dr. Tomás J. Aragón pledged that the statewide health department would address the SOGI data issues raised in the auditor's report.
"We believe in the importance of collecting SOGI data to identify disparities and acting to change inequities in California's health systems," wrote Aragón, who is also director of the state public health department and formerly worked for the San Francisco public health department. "Best practices related to SOGI data collection are evolving. Public Health will continue to strive to achieve and improve compliance in our data collection efforts and overall use of data to advance health equity in California."
Aragón noted that the state health agency had "substantially complied" with the original SOGI legislation Assembly Bill 959, known as The LGBT Disparities Reduction Act. He listed, for example, CADPH adding SOGI questions to its Confidential Morbidity reports and updating the California Reportable Disease Information Exchange known as CalREDIE so it could receive data from local health jurisdictions.
Nonetheless, he acknowledged that the auditor's report highlighted other issues that need to be addressed "that go beyond the requirements" of AB 959, which had been authored by San Francisco City Attorney David Chiu when he served in the state Assembly. Aragón committed to reviewing the auditor's recommendations and to reporting on the state health department's progress within 60 days as well as in six months and next April.
"We acknowledge and appreciate the insights shared in the audit report. Public Health will both work to improve our own efforts, as well as support local health jurisdictions and health care providers to collect this data," he wrote.
In an unsigned statement the state health department emailed to the B.A.R. Thursday afternoon, the agency acknowledged it has "much more work ahead of us. We remain dedicated in our efforts to get individuals to complete the SOGI questions, and know we can and must do better."
It said the agency was recommitting its support for local health departments and health care providers to collect SOGI data, as well as ensuring it was using "best practices" for gathering the demographic information.
"More specifically, we will focus on educating providers who collect these data on the ground in communities across the state. We will also look to engage patients and consumers to not only encourage them to complete these questions when visiting their provider, but to also help them understand the collective importance of these data to improve the delivery of programs and services," stated the agency. "Finally, we commit to working with our academic and research partners to turn these data into insights, knowledge, and ultimately action."
Sean Cahill, a gay man who is director of health policy at the Boston-based Fenway Institute, has been leading efforts nationally to improve SOGI data collection. He called Parks' audit report "a solid analysis and explanation of systemic shortcomings that will hopefully serve as a blueprint for fixing systemic gaps and enhancing SOGI data collection in California's public health data systems."
He noted that California has been a national leader on SOGI data collection for many years. Thus, what Golden State officials do to improve their efforts in obtaining LGBTQ demographic information could be replicated by their colleagues in other states.
"This State Auditor's Report identifies areas where California Public Health could expand its data collection and use to improve health equity for LGBTQI+ Californians. I hope that Public Health views this constructive feedback as an opportunity to expand its collection and use of SOGI data to enhance health equity and reduce disparities," wrote Cahill in an emailed reply to the B.A.R.
The state auditor's full report can be downloaded here.
UPDATED 4/27/2023 with additional comment from Senator Wiener, the state health agency, and Fenway's Cahill.
Help keep the Bay Area Reporter going in these tough times. To support local, independent, LGBTQ journalism, consider becoming a BAR member.