State Auditor Grant Parks released the long-awaited This text will be the linkreport> on the California Department of Public Health's abysmal effort collecting, reporting, and using sexual orientation and gender identity data and it's as bad as we'd feared. Despite efforts going back to former governor Jerry Brown's administration, CADPH is woefully unprepared to implement the SOGI collection task. This has taken on new urgency in the age of COVID-19. Despite a California law signed by 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, as we have reported for years.
Parks' April 27 report was scathing, noting that CADPH "has been slow to adopt and enforce standardized definitions, guidelines, and training to ensure the consistent collection, analysis, and reporting of demographic data that details sexual orientation and gender identity." And, "Despite their critical role in collecting SOGI information, Public Health has not provided guidelines, training, or resources to local health jurisdictions or health care providers regarding definitions for collecting SOGI information or for recommended questions and response fields," Parks wrote in his summary.
In response, 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 with updates in 60 days, six months, and a year's time. We hope so. Aragón used to be the health officer for San Francisco, and as we note, the city health department hasn't done much better when it comes to SOGI data collection.
Regarding the audit, only a small number of CADPH forms — 17 — require SOGI data collection. The majority of the 129 forms that collect demographic data — 105 — are exempt, but not prohibited, from collecting the information, Parks noted, because data is collected by a third party, such as a local health jurisdiction. That, of course, shines a light on the necessity for local jurisdictions to collect SOGI data, but even in San Francisco the health department has been criticized for its continued problems in SOGI data collection, as we reported two years ago.
Gay state Senator Scott Wiener (D-San Francisco) spearheaded legislation in May 2020 that would require the state to collect SOGI data of COVID patients. Governor Gavin Newsom signed Senate Bill 932, and yet, three years later, CADPH "has not provided guidelines, training, or resources to local health jurisdictions or health care providers regarding definitions for collecting SOGI information or for recommended questions and response fields," Parks wrote in the report.
Parks also found that CADPH's system for collecting data and reporting data on communicable diseases is inadequate for collecting and reporting SOGI data because the systems have technological barriers. We've reported on how those barriers, especially at the federal level, also impede SOGI data collection. In 2010, CADPH created the California Reportable Disease Information Exchange (CalREDIE), a statewide database and surveillance system for reporting communicable diseases. But Parks reported that three of the largest local health jurisdictions in the state — San Diego, Los Angeles, and San Francisco — don't even use that system for some of their communicable disease reporting.
All of this is to say that CADPH is failing miserably when it comes to SOGI data collection. Parks' report made several recommendations, including that it "develop a process to verify that all local health jurisdictions that do not use CalREDIE are reporting SOGI data to Public Health and are complying with SOGI data reporting requirements by October 2023," and that "Public Health should develop an action plan to ensure that CalREDIE users and Public Health programs can extract SOGI data for all of the reportable disease conditions currently in CalREDIE by October 2023." That is a best case scenario and one that is, in our view, likely not to be met. The bureaucracy in CADPH is overwhelming, and we don't expect to see any real improvement this year.
The thing is that we've long known that health disparities exist in the LGBTQ community; that's why we've been covering the SOGI issue so extensively. The data is critical in terms of allocating funds to hard-hit population groups and regions, and ensuring that the needs of LGBTQs are addressed, as Parks pointed out in the report.
Wiener is planning to introduce another bill next year with gay freshman Assemblymember Rick Zbur (D-West Hollywood), after thoroughly reviewing the auditor's report. One thing they might consider is legislation to require CADPH to collect SOGI data when it is collected by third parties, including local health jurisdictions and health care providers. That would resolve one of the major problems we see now, and local health jurisdictions should be collecting it anyway. Getting all local health jurisdictions to use the CalREDIE system for reporting communicable diseases would also be a good idea, and Aragón should take the lead on this without legislation. These health jurisdictions all seem to have their own data collection systems that are unable to mesh with each other. Another issue involves laboratories, which are not required to submit SOGI data to CADPH and, Parks wrote in the report, are unable to do so.
Removing all these barriers was supposed to already be underway, but the state auditor's report makes it clear that much of the work has barely begun. That needs to change. SOGI data is crucial, not only for COVID, but also for the next potential pandemic.
Help keep the Bay Area Reporter going in these tough times. To support local, independent, LGBTQ journalism, consider becoming a BAR member.