California is not collecting enough data about LGBTQ+ health, audit finds

A new audit, released Thursday, finds California is missing opportunities to learn more about LGBTQ+ health in the state. The auditor found that only a small number of the forms the California Department of Public Health distributes to collect demographic data include questions about sexual orientation and gender identity, otherwise known as SOGI data. 

“The department has not had clear and consistent policies regarding how such forms should collect SOGI data,” the report said. It also found local public health jurisdictions across the state lack guidance or training in how to collect the information. 

Inconsistent reporting and collection has “limited [the department’s] ability to identify and address health disparities among those in the lesbian, gay, bisexual, transgender, and queer or questioning population,” the auditor’s report said.

Advocates and activists say not collecting this data makes LGBTQ+ health issues invisible and undermines opportunity to humanize patients and conduct specific health interventions. 

The audit analyzed 129 regularly deployed forms that ask about demographic data and found 105 don’t have any questions about sexual orientation and gender identity, and only 17 collect the data in a complete way. 

For the limited data it does collect, the auditor found that very little is done with it: Technical barriers are standing in the way of analyzing some of the data, and no reports have reached the state Legislature. 
Dannie Ceseña, Director of the California LGBTQ Health and Human Services Network, said he was not surprised when he read the report. The need to collect this type of data has “been a drum that we’ve been beating for a very long time,” he said. 

Ceseña says his organization and other partners want CDPH to ask about sexual orientation and gender identity in all kinds of programs: Women Infants & Children (WIC), First Five, the Tobacco Control Program and more, just as the public health agency does with race and ethnicity. 

“We need to think about one: Who's using their programs that we're not recognizing and that we're erasing,” Ceseña said. “And two: The types of educational materials that could be created that could address the various health disparities that the community experiences.”

One area where specific data about the LGBTQ+ population has enhanced health messaging is in tobacco usage. 

Studies show LGBTQ+ people are more likely than straight people to smoke cigarettes, and transgender people are four times more likely to use e-cigarettes than cisgender people. Lesbian, gay and bisexual adults also have more risk factors than straight people for cardiovascular disease, which can follow commercial tobacco usage. 

The Centers for Disease Control and Prevention attribute this trend, in part, to specific advertising done by tobacco companies that targets LGBTQ+ people, and to heightened levels of stress the population experiences, due to stigma. 

Dr. Carl Streed is an assistant professor at the Boston University Chobanian & Avedisian School of Medicine and the research lead at Boston Medical Center’s GenderCare Center. He’s written extensively about the importance of SOGI data in providing clinical care.

Streed says getting a fuller picture can help health departments better characterize issues related to substance use, mental health and more.

“I'm really interested in trying to address risk factors for serious outcomes such as heart attack, stroke, cancer and the like,” he said. “And we can't really do that without having this information.”

A crisis in local jurisdictions

A law passed in 2018 requires the state of California to collect SOGI information, but most of the responsibility has been passed on to local public health jurisdictions. The state auditor’s report notes that currently, these departments and health care providers aren’t properly briefed about why SOGI data collection matters, how it should be collected, or what standardized language should be used. 

According to the report, that leads to a fractured and inconsistent reporting structure, where health care providers, especially in rural areas like Shasta, Calaveras, and Sutter counties, are uncomfortable asking questions due to patient response.

Ceseña says the network has heard a wide variety of experiences from LGBTQ+ people in rural areas, and believes the lack of comfort in speaking about sexual orientation and gender identity leads to dehumanization of patients.

“I really believe that CDPH has the power to start that shift,” he said. “To really start to train folks and to create a safer state for our community.”

In an emailed statement to CapRadio, CDPH staff acknowledged the department has “more work to do” to improve data collection and response. 

“We remain dedicated in our efforts to get individuals to complete the SOGI questions, and know we can and must do better,” the statement said. 

As stated in its letter of response to the State Auditor’s Office, the department is expected to provide updates on its progress in two months, six months and one year.