California officials are accusing a little known panel of impeding the health of LGBTQ Americans.
In a letter sent Thursday to the co-chairs of the Public Health Work Group, Dr. Mark Ghaly, the secretary of the California Health and Human Services Agency, and gay state Senator Scott Wiener (D-San Francisco) implored the panel to "take immediate steps" to address issues that are hampering efforts in California and other states to collect sexual orientation and gender identity (SOGI) data in health settings.
The issue has taken on greater import over the last year due to the COVID pandemic, as the lack of SOGI data on people testing positive for the novel coronavirus has made it impossible to know how widespread infections have been in the LGBTQ community or how many LGBTQ Americans have been killed by the virus. Many LGBTQ people have underlying health issues that make them more susceptible to COVID-19 or work in front-line industries that place them at higher risk of contracting the virus.
"It is just a bad situation. We are going through yet another pandemic where our community is effectively invisible," Wiener told the Bay Area Reporter in a recent interview regarding the SOGI reporting problems.
The Public Health Work Group oversees what are known as Health Level Seven International (HL7) standards that provide guidance on the collection of certain patient characteristics, such as racial and ethnic data. But they do not include SOGI data, which has hampered efforts in California and other states to collect health information about LGBTQ people in order to better address what is ailing them.
In their letter, Ghaly and Wiener asked the HL7 work group to immediately "modify its standards to include sexual orientation and gender identity (SOGI) data in such a way that ensures interoperability between California's laboratories and the state's electronic disease reporting and surveillance system. HL7's current lack of SOGI data standards is impeding California's efforts to measure, with the goal of ultimately ensuring, health equity for the state's LGBTQ and gender-nonconforming residents."
The B.A.R. reached out to three of the work group co-chairs Thursday for a response to the letter and has yet to hear back. The B.A.R. had initially reached out to the co-chairs last week for an interview about the issues related to the collection of the SOGI data but none agreed to discuss the matter.
"I've spoken with my colleagues and we don't think we are the right people and we unfortunately haven't been able to identify anyone else yet. We'll be in touch if we identify an appropriate connection," replied co-chair Craig Newman, an interoperability standards analyst with the nonprofit research and consulting organization Altarum, on January 19.
'Continuing conversation'
The January 21 letter from the California officials comes after Wiener and gay Assemblyman Evan Low (D-Campbell), the chair of the Legislative LGBTQ Caucus, held a virtual conference call with members of the HL7 work group January 7 to discuss the SOGI data matter. Wiener had told the B.A.R. they "had a really good conversation" about how the system works and what some of the challenges are in updating it to include the SOGI questions.
"It is a continuing conversation. They clearly understood why the data is important," said Wiener. "One of the real challenges they sort of flagged, which is very real because we have chaotic health care systems, is health care data in general is really fragmented and inconsistent and not great. It is not centralized."
The SOGI questions are often asked in both a doctor's office and also in lab settings, but the records are not easily shared among the different locations, noted Wiener, especially if medical systems and health care providers have yet to fully digitize their record keeping.
"We very much want these lab data protocols to change to include the ability to report SOGI data," said Wiener. "We are still getting to the bottom of it and investigating why this train wreck with CDPH is happening and what are our options in fixing it."
Wiener had reached out to the work group after he met late last year with Dr. Erica Pan, the former acting director of the California Department of Public Health, to discuss why the state health agency is not reporting the number of COVID tests and deaths among LGBTQ Californians. During their meeting, Pan for the first time brought up the problems related to the HL7 standards, Wiener told the B.A.R.
"What CDPH has told us is the labs get that data and it is being stripped out because the national reporting protocol that the labs use doesn't have SOGI fields," said Wiener. "So the data is effectively being stripped out when it goes into this system. We still don't have transparency about what happens to that data."
Fed up last year after months of inaction on collecting such information, Wiener introduced legislation to require state health officials begin doing so. Last summer Ghaly instituted regulations that were expected to result in everyone getting tested for COVID-19 to be asked the SOGI questions.
Governor Gavin Newsom in September signed Wiener's Senate Bill 932 requiring the SOGI data to immediately be collected. But as the B.A.R. first reported in November, state and most local health officials had not fully implemented the law or the regulations. While San Francisco had been asking about gender identity, it only updated its COVID data collection to ask about sexual orientation last month.
No reporting protocols
Because of the problems with the HL7 standards, there are no reporting protocols to share the SOGI data gathered at the local level with state health officials to get a clear understanding about how COVID-19 is impacting LGBTQ Californians, Wiener pointed out in his interview with the B.A.R.
"The federal system they use doesn't have SOGI fields, so we are all sort of pulling our hair out on this," he said. "CDPH either didn't know about this earlier or just got around to telling us now. It is very, very troubling."
The lack of the SOGI data collection regarding COVID cases and deaths was particularly frustrating for Wiener and other LGBTQ leaders since state lawmakers years ago had passed legislation requiring a number of the state's health and social service agencies to collect SOGI data. Other states have also sought to collect SOGI data but have encountered similar issues in reporting the information.
In their letter to the HL7 work group Ghaly and Wiener noted how state lawmakers had adopted Wiener's SB 932 last year in order to address the issues of SOGI data collection related to COVID-19 and other communicable disease cases.
They pointed out that the law requires local health officers update any electronic tools used to report cases of communicable disease to the CDPH to include the SOGI questions and requires health care providers to report, if known, the SOGI information of their patients with a case of a reportable disease.
"However, the absence of HL7 standards related to SOGI is creating a significant barrier to the ability of laboratory data systems to both ingest SOGI data sent to them by providers, and then to transmit those data to our state's electronic disease reporting and surveillance system," wrote Ghaly and Wiener. "We are urgently requesting HL7 to help rectify this situation as soon as possible by modifying its standards and guides to include reporting of SOGI data, especially the HL7 Version 2.5.1 guide for Electronic Laboratory Reporting to Public Health."
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