California health officials detail actions for improving LGBTQ data collection

  • by Matthew S. Bajko, Assistant Editor
  • Friday September 1, 2023
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The California Department of Public Health has responded to the state auditor's April report about its lackluster LGBTQ data collection. Photo: Courtesy CADPH
The California Department of Public Health has responded to the state auditor's April report about its lackluster LGBTQ data collection. Photo: Courtesy CADPH

Following a damning report issued in the spring by the state's auditor about its lackluster LGBTQ health data collection, California's health department has provided an update on how it plans to address the findings of the audit. It specifically responded to 10 recommendations from the auditor with timelines for when it expected to resolve the various issues.

They include updating the forms it uses to ensure they include questions about people's sexual orientation and gender identity (SOGI), ensuring the phrasing of the queries are up to date, and making sure the data collected at the local level is sent to the state agency to review and report on. According to health officials, they already have completed several steps toward improving the department's knowledge about the health of LGBTQ Californians, while other initiatives are expected to be done by this October and December.

For instance, health officials reported that by the end of June the department had addressed the auditor's suggestion that it require regular reporting on SOGI data by its various branches that collect such information. Per the auditor, the reports should include the branches' efforts to record and report SOGI data, the outcomes of their SOGI data analyses, and the steps they have taken to improve their services or program outcomes for underrepresented populations.

"Public Health is currently developing an automated system to regularly collect reports from all its programs to track progress on the objectives listed on this recommendation, including the programs' efforts to record and report SOGI data, the outcomes of their SOGI data analyses, and the steps they have taken to improve their services or program outcomes for underrepresented populations," according to the department's response.

Scathing report

In April, California State Auditor Grant Parks released the 45-page report titled "The California Department of Public Health: It Has Not Collected and Reported Sexual Orientation and Gender Identity Data as State Law Intended." It stemmed from legislation 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.

But as was revealed by the lack of information on how the COVID pandemic was impacting LGBTQ people, it became clear that the state health department had not met its requirements for the collection of SOGI data. It prompted outcries from LGBTQ advocates and calls by LGBTQ legislators for an audit of the state agency.

As the Bay Area Reporter first reported online April 27, Parks had disclosed in his audit that 105 out of 129 forms used by the state health department are exempted from collecting SOGI data because a third party, such as a local health jurisdiction, oversees them. And only 17 of the 24 forms that are required to collect SOGI data "do so in a complete manner," Parks noted.

As detailed in the audit, there is little SOGI data made available to the public. It also highlighted the fact that "resource and technical limitations" make it impossible for the state's health department to export the SOGI data it does collect for over 100 of 128 reportable disease conditions to an electronic database it oversees.

"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," wrote Parks in an April 27 letter he submitted to state leaders.

On August 24 Parks' office released responses by the state health agency to 10 of the audit's recommendations. Some were duplicative answers to several of the suggested actions contained in the audit.

In response to recommendations that the public health agency develop and implement procedures to review and approve its branches' SOGI data collection processes, including a review of branches' reasons for not collecting SOGI data, health officials responded that they planned to reconvene the department's SOGI Workgroup, which will be tasked with recommending standards for displaying SOGI data. It is expected to do so by this December, thus addressing another of the audit report's suggestions that the goals issued in 2022 by the health department's SOGI Workgroup be implemented.

"Public Health is continuing to support the 2022 SOGI Workgroup on the data collection recommendations, which provide updated guidance on SOGI question wording and response options. These recommendations are with the Director's Office for review and approval," stated health officials in their response.

The health officials also said they were directing all of its centers to form data collection/form workgroups to review how each center is collecting health information. They are also instructing the centers to streamline their data collection practices, including conducting periodic reviews of whether forms are required to collect SOGI data, assessing their SOGI data collection processes, and reviewing if branches' reasons for not collecting SOGI data comply with departmental standards.

"Of the seven forms identified as non-compliant in the audit report, further investigation has revealed that three of these forms were one-time use only and no longer relevant to the report," health officials reported to Parks' office.

Two forms became compliant by July 1, reported health officials, while the other form is to be compliant by September 30. As for the one remaining form, public health officials disclosed they are in conversation with the program responsible to develop a work plan to make the form compliant.

Another recommendation in the audit report was to have users of the California Reportable Disease Information Exchange, known as CalREDIE, be able to extract SOGI data for all of the reportable disease conditions currently in the database by October 2023. According to public health officials, they had done so as of July.

According to their response, the Center for Infectious Diseases (CID) was moving the CalREDIE data to a cloud-based data warehouse so it is easier to extract and analyze the available SOGI data. The CID is also working to meet another audit recommendation that by October, all local health jurisdictions not using CalREDIE, including Los Angeles, San Diego, and San Francisco, are still reporting SOGI data to the state health department.

Officials at CID have been in discussions with their local counterparts about "the technical specifications their jurisdictions will need to implement to transmit automated data files, including collected SOGI data," to the state agency, according to its audit response.

As for the audit report saying the state agency should provide local health jurisdictions and health care providers with a standardized definition, wording, and format of SOGI data questions and response fields — and directions for how to solicit SOGI information and education for why doing so is important — state health officials expected to complete both as of the end of August.

"Currently these recommendations are pending review from the Director's Office (DO). Once the DO approves, the SOGI recommendations will be posted on a public website for providers and local health jurisdictions to satisfy this recommendation," the health department stated.

In regard to the auditor's concerns that the new surveillance system that the state's public health agency will be utilizing, along with local health jurisdictions, is able to receive SOGI data and allow for it to be extracted and reportable, the health department said it is an ongoing concern it is working to address.

It noted in its response to the auditor that the Center for Infectious Diseases has included several "functional requirements" so that the new surveillance system can receive SOGI data collected from local health jurisdictions and can allow for the extraction and reporting of SOGI data for all reportable disease conditions. For example, the new system's Master Person Index is required to "capture SOGI" and "must allow users to view the history of SOGI, which may change over time, for an individual."

The auditor's office continues to assess the health department's responses to its report. It said it looks "forward to reviewing Public Health's progress towards implementing" its various recommendations.

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