The CDPH audit from the California State Auditor examines “Missed Opportunities to Collect and Report Sexual Orientation and Gender Identity Data,” and makes notable findings around the department’s use of data. Among them, “state law exemptions” that permit but do not require CDPH to collect SOGI data, and “inconsistent” policies or processes in that data collection, mean the department “often” does not collect SOGI data on forms that already seek data on ancestry and ethnic origin. Additionally, while CDPH requires “local health jurisdictions and health care providers” to include SOGI information when they report on diseases or conditions including tetanus and syphilis — and “local health jurisdictions and health care providers are responsible for collecting the data for the majority of Public Health’s forms” — the department’s director’s office “acknowledged” it has not “provided departmentwide guidelines to local health jurisdictions or to health care providers” on standardized language for such questions or answers, or on soliciting the information and on the importance of its collection. On IT and innovation, the Auditor finds, generally, that CDPH has unresolved “technical barriers that limit its electronic communicable disease surveillance system from collecting SOGI data,” and has a “limited ability” to use and analyze such data that it does collect, to “implement and deliver critical services.” Among the takeaways:
- “Technical barriers” limit CDPH’s California Reportable Disease Information Exchange (CalREDIE) collection of SOGI data. “To put this into context, these data help us understand the needs of lesbian, gay, bisexual, transgender, and queer Californians. These data also help us get insights into the experiences of marginalized communities in accessing health and human services,” CDPH told Industry Insider — California via email. “Simply put, without these data we are not able to define the magnitude of inequities and disparities this community experiences, nor will we be able to develop the necessary program and policy solutions to close those gaps.”
The exact nature of the technical barriers isn’t described in the audit, which does offer some clarity on the result of the impediments. Health-care providers and local health jurisdictions, per the audit, can submit “complete SOGI data” — but CDPH and those jurisdictions are only “partially able” to extract that data; they can’t access it for “approximately 79 percent of the communicable diseases reported to CalREDIE.” State law has since 2020 “required that electronic reporting tools that county, city, or district health officers use to report cases of certain communicable diseases” to CDPH should “be able to collect and report SOGI data”; and the department updated CalREDIE in 2020 to allow it to collect that information. But “data protocols and other factors limit Public Health's ability to collect SOGI data from other systems.” Per the audit summary: “Instead of resolving the technical issues, the department plans to replace its current system with a new surveillance system in 2025.” - Another vital arm of public health, laboratories, find themselves wholly “unable to submit complete SOGI data,” the audit said. Laboratories “generate nearly all new case reports” in CalREDIE, per CDPH, but find themselves limited in the demographic data they can provide in part because reporting it isn’t required. But even if labs received SOGI information from health care providers, they wouldn’t be able to report it to CDPH — because labs now “electronically transmit information” to CDPH “using an international data standard,” Health Level 7 (HL7). That standard, the audit said, “does not currently contain a standard for transmitting SOGI data.” The organization that developed HL7 has published a “short-term solution” that would let labs transmit SOGI data — but it’s not compatible with CalREDIE as it now exists and, a “program manager explained” to the auditor’s office, with a new system on the horizon in 2025, “the department does not want to invest time and resources in updates to CalREDIE as it prepares to decommission it.”
- CDPH programs use the Data Distribution Portal to access data exports and reports from CalREDIE — but CalREDIE staff have to “manually update the data portal for each disease condition” in order to extract complete SOGI data; and as of February, had only updated 27 of 128 reportable disease conditions in the portal “to enable the system to extract complete SOGI data for those conditions.” This also means, the audit pointed out, CDPH programs can’t access SOGI information “for most of the disease conditions they oversee.” Public Health “lacks the time and resources to update records for all diseases,” according to the CalREDIE Stakeholder Support Section chief, in the audit. But CDPH has prioritized updating the portal “for disease conditions that are current public health concerns, such as COVID-19 and Mpox.” According to the audit, CalREDIE’s program manager said CDPH has not prioritized time or resources to handle these technical issues “because some issues are impossible to resolve” due to system design and plans to replace CalREDIE.
- As of January, the California Health and Human Services Agency — CDPH’s umbrella agency — and the California Department of Technology have approved the first stage of CDPH’s proposal to develop a new surveillance system. Procurement to choose a vendor to build the new system is expected to begin in May and wrap in October. The new system’s total cost is estimated at around $168 million and the department “plans to work with all local health jurisdictions” to address “technological challenges” between them. The new system is expected to enable timely access by CDPH to “all local health jurisdictions’ information on cases of reportable communicable diseases, including SOGI information.” Completion, the audit notes, “is at least two years away.”
- The Auditor’s recommendations include that the Legislature should require an annual report from CDPH to the public and the Legislature on its efforts to “collect, analyze, and report SOGI data, including a comprehensive list of forms that are required to collect SOGI data”; the status of CalREDIE improvements or replacement; the outcomes of data analyses CDPH has done or let other “qualified researchers do”; and on its efforts to implement this audit’s recommendations. The Auditor also recommends the Legislature amend SOGI data collection law “to require Public Health to collect SOGI data from third-party entities, including local health jurisdictions, on any forms or electronic data systems unless prohibited by federal or state law”; and that it amend state law to allow “voluntarily provided sexual orientation and gender identity data” to be included with reported immunization data. Among the Auditor’s recommendations for CDPH are that it develop a process to verify local jurisdictions that don’t use CalREDIE are reporting SOGI data to the department and are complying with SOGI reporting requirements by October; that it develop an action plan to ensure CalREDIE users and department programs can extract SOGI data for all the reportable disease conditions in the system, also by October; and that it work with local jurisdictions and its future vendor by October to ensure the new system can receive SOGI data from locals and extract and report SOGI data for “all reportable disease conditions.”
- In a response letter included with the audit, Dr. Tomás J. Aragón, CDPH director and state public health officer, said officials “believe in the importance of collecting SOGI data to identify disparities and acting to change inequities in California’s health systems”; that best practices around collection of that data “are evolving”; and that the department will “continue to strive to achieve and improve compliance in our data collection efforts and overall use of data to advance health equity” statewide.
“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,” Aragón said, committing the department to reviewing the Auditor’s recommendations and reporting its progress regularly.
“While we have made progress at CDPH and across the California Health and Human Services Agency on the collection of sexual orientation and gender identity data, we have much more work ahead of us,” CDPH said via email. “We remain dedicated in our efforts to get individuals to complete the SOGI questions, and know we can and must do better.” IICA may have additional coverage on this in coming days.
