California health officials pilot LGBTQ data collection plan

  • by Matthew S. Bajko, Assistant Editor
  • Thursday December 14, 2023
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California health officials have started a pilot program in Los Angeles County for the sharing of sexual orientation and gender identity data. Photo: Courtesy CADPH<br>
California health officials have started a pilot program in Los Angeles County for the sharing of sexual orientation and gender identity data. Photo: Courtesy CADPH

As it continues to address lapses in its gathering of LGBTQ health information, California's health department is piloting a plan in Los Angeles County for sharing sexual orientation and gender identity data. If deemed successful, the pilot project could be expanded to other counties in the state, including San Francisco, to ensure local SOGI data is being shared with the state agency.

At issue is that not every local health jurisdiction uses the California Reportable Disease Information Exchange, known as CalREDIE, to report all communicable disease data, including SOGI data, to state public health officials. Thus, the state health agency's Center for Infectious Diseases has been developing a plan to ensure that the information is being transmitted at the local level to Sacramento.

The center has been working with the state health agency's Information Technology Services Division to make sure its technical infrastructure for receipt of automated data files is utilizing a cloud-based data warehouse that was established to track how the COVID-19 epidemic was impacting the Golden State. It also will be informing local health officials who do not use CalREDIE to report all disease conditions of the technical specifications their jurisdictions will need to implement so they are transmitting the required LGBTQ health information to the state.

It will be testing out the collection of SOGI data for upward of 20 reportable disease conditions with Los Angeles County's health department through March. By March 31, 2026, state health officials would like to see all local health agencies not using CalREDIE be reporting the LGBTQ health information.

"Information gained from this pilot will inform and guide the process for the remaining reportable disease conditions from LA County, as well as San Diego and San Francisco for diseases that are not in CalREDIE," stated state health officials in a response sent to California State Auditor Grant Parks this fall.

Parks' office released the response December 14. It stems from the issuance last April of his 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."

Issues have derailed data collection

Legislation signed by former governor Jerry Brown had mandated the state's departments of health care services, public health, social services, and aging begin gathering SOGI data in 2016. But as the Bay Area Reporter has repeatedly reported over the years, and Parks' audit explained in detail, myriad issues have derailed the collection of the LGBTQ health information.

For instance, 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.

Since its release the state health department has been working to address the various issues raised by the audit, as the B.A.R. reported in September. It's been reviewing and updating the forms it uses to ensure they include SOGI questions and that the phrasing of the queries are up to date, and expects to post by the end of this month the feedback it has received regarding the standardized definition, wording, and format of SOGI data questions and response fields.

"The SOGI data display standards are still in discussion. Staff are developing recommendations addressing the major issues that affect the display of SOGI data, including privacy protection of small cell sizes and sources of SOGI denominator data," state health officials informed the auditor in October.

The Center for Infectious Diseases recently informed the auditor that it continues to add SOGI data elements to each data extract in the CalREDIE Data Warehouse so that they are available to public health programs. It expects to have it fully updated by the end of April and the SOGI data accessible to local health jurisdictions by October 31, 2024.

"As of September 20, 2023, 80 of the 128 extracts have been updated with SOGI data elements, an increase of 31 since the last update was reported," according to the center.

But other steps to address the audit findings will require several years to implement, the state health department has disclosed in its responses to Parks' office this fall. It is moving to a new surveillance system and is requiring that the vendor includes SOGI data fields, though doing so by July 1, 2026, will require additional state funding in next year's budget.

"As part of the project process, there will be a 'requirements traceability matrix,' as well as an independent verification and validation process to ensure project requirements and objectives are met once a contract is executed with a vendor," state health officials noted in their most recent response to the auditor.

Among the functional requirements for the new surveillance system that state health officials are asking for is that the Master Person Index captures SOGI data and allows users to view the SOGI data history since people's answers to those questions may change over time. It also must allow the SOGI data to be customizable by disease.

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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