California’s LGBTQ Health Data Pilot: Addressing Collection Gaps


California’s health department is working on a strategy for exchanging sexual orientation and gender identity data in Los Angeles County as it works to address gaps in its collection of LGBTQ health information.

If the pilot initiative is deemed effective, it might be expanded to other counties in the state, including San Francisco, to ensure local SOGI data is shared with the state agency. The problem is that not every local health jurisdiction uses the California Reportable Illness Information Exchange, or CalREDIE, to send all communicable illness data to state public health officials, including SOGI data.

As a result, the state health agency’s Center for Infectious Diseases has been working on a mechanism to ensure that information is communicated locally to Sacramento.

The center has been collaborating with the state health agency’s Information Technology Services Division to ensure that its technical infrastructure for receiving automated data files is utilizing a cloud-based data warehouse that was established to track how the COVID-19 epidemic was affecting California.

It will also notify local health officials who do not use CalREDIE to report all illness conditions of the technological standards their jurisdictions must implement to communicate the required LGBTQ health information to the state.

Through March, it will be testing the gathering of SOGI data for up to 20 reportable disease conditions with Los Angeles County’s health department. State health authorities hope that by March 31, 2026, all local health agencies that do not use CalREDIE will be reporting 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,” state health officials stated this fall in a response to California State Auditor Grant Parks.

The response was issued by Parks’ office on December 14. It originates from his 45-page study last April headlined “The California Department of Public Health: It Has Not Collected and Reported Sexual Orientation and Gender Identity Data as State Law Intended.”

Challenges Have Disrupted the Collection of Data

Former governor Jerry Brown signed a bill that said the state’s health care services, public health, social services, and aging departments had to start collecting SOGI statistics in 2016.

But, as the Bay Area Reporter has said many times over the years and Parks’ audit explained in great detail, many problems have made it impossible to collect LGBTQ health information.

For example, Parks said in his report that 105 of the 129 forms used by the state health department do not need to collect SOGI data because they are overseen by a third party, like a local health jurisdiction. Only 17 of the 24 forms needed to collect SOGI data “do so in a complete manner,” Parks pointed out.

The audit goes into great depth about how little SOGI data is open to the public. It also said that the state’s health department can’t export the SOGI data it does collect for more than 100 of the 128 disease conditions that need to be reported to an electronic database it is in charge of because of “resource and technical limitations.”

As the B.A.R. reported in September, the state health department has been working to fix the problems that the audit brought up since it was made public. It has been looking over and updating the forms it uses to make sure they have up-to-date SOGI questions and the language used in the queries is correct.

By the end of this month, it plans to share the feedback it has received on the standard definition, wording, and format of SOGI data questions and response fields.

“The SOGI standards for data display are still being talked about.” “Staff is working on suggestions to deal with the main problems that affect the display of SOGI data, such as protecting the privacy of small cell sizes and the sources of SOGI denominator data,” state health officials told the auditor in October.

The inspector was recently told by the Center for Infectious Diseases that it is still adding SOGI data elements to each data extract in the CalREDIE Data Warehouse so that public health programs can use them. All of the changes should be made by the end of April, and local health departments should be able to view the SOGI data 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,” the center says.

The state health department told Parks’ office this fall that some steps it plans to take to deal with the audit results will not be possible for several years. It is getting a new surveillance system and wants the provider to include SOGI data fields. However, getting this done by July 1, 2026, will cost the state more money next year.

State health officials told the auditor in their most recent response that there would be a “requirements traceability matrix” and an independent verification and validation process to make sure that the project’s goals and requirements are met once a contract is signed with a vendor.

State health officials want the new surveillance system to have certain features. One of these is that the Master Person Index should record SOGI data and let users see the past of SOGI data, since people’s answers to those questions may change over time. It must also let the SOGI info be changed based on the disease.

The auditor’s office is still looking at how the health department responded to its report. It said that it “looks forward to reviewing Public Health’s progress toward implementing” the different suggestions it made.

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