Ensuring equity in data collection and data exchange will require health care entities to adapt to new technology and be inclusive of all individuals accessing and interacting with health care systems. On April 11, 2024, Connecting for Better Health welcomed organizations sponsoring legislation this year in California. The discussion included presentations by the California LGBTQ Health and Human Services Network and the California Medical Association, and an overview of the recent federal changes from the Office of Management and Budget.

Senate Bill 957 (Wiener): Enhancing LGBTQ+ Health Data Collection

Astin Williams and Isaias Guzman of the California LGBTQ Health and Human Services Network joined the coalition to speak about Senator Scott Wiener’s SB 957, focused on the collection of Sexual Orientation and Gender Identity (SOGI) data. The bill aims to bridge the gaps in consistent data collection by the California Department of Public Health (CDPH). SB 957 would require: 

• The collection of SOGI data from third party entities including local health jurisdictions.
• Voluntary SOGI data to be included in the statewide immunization registry to identify immunization-related disparities.
• CDPH to provide an annual report on its efforts to collect SOGI data and improve health outcomes for underserved LGBTQ+ communities.

The LGBTQ Health and Human Services Network underscored the importance of understanding and addressing the health disparities faced by LGBTQ+ individuals. The organization highlighted research that showed LGBTQ+ individuals to have a higher risk of substance use, STIs, cancers, anxiety, depression, cardiovascular diseases, and suicide and experience an overall worse quality of care due to stigma, a lack of healthcare provider awareness, and insensitivity to the unique needs of the community.  

AI in Healthcare: Navigating Regulation and Transparency

David Ford, Vice President of Health Information Technology at CMA, presented on the need to regulate the emerging, innovative technology of artificial intelligence (AI) in health care. As AI continues to be implemented in medical decision-making, algorithmic bias and transparency concerns persist. Although there are federal initiatives like HTI-1 in place to emphasize algorithmic transparency, further legislation is needed in California to mitigate the potential flaws of AI if tools are sourced from flawed systems trained on biased data. Ford provided an overview of numerous AI-related bills in the California legislature: 

• SB 1120 (Becker): A bill sponsored by CMA that requires human oversight in healthcare decisions. 
• AB 2013 (Irwin): Requires transparency of data sources used to train AI systems to reduce algorithmic bias.
• AB 2058 (Weber): Requires disclosures on medical devices about the limitations of the devices.
• AB 2885 (Bauer-Kahan): Formally defines AI in the law.
• AB 2930 (Bauer-Kahan): Requires annual testing of automated decision systems to be free of algorithmic bias and threatens potential fines for violations. 
• AB 3030 (Calderon): Requires AI chat bot responses to be disclosed to patients and subjects providers who do not comply to the licensure sanctions.

In discussions that followed, C4BH members emphasized the need for a balance between leveraging the powerful technology for improved health care outcomes and ensuring it complements, rather than replaces, human entities.

OMB Revisions: Advancing Data Collection Equity

Lastly, we were joined by Kevin Quach of BluePath Health to discuss the OMB’s updates to data collection standards. The revisions include the addition of a combined question for race and ethnicity to improve clarity, the addition of Middle Eastern or North African (MENA) as new minimum category, and a requirement for additional detail for race and ethnicity beyond the minimum required for further data disaggregation. These revisions will be reflected in the 2030 census and the American Community Survey moving forward, offering more complete data on the makeup of the United States.

Moving Forward: Advocacy and Ongoing Dialogue

Advancing equitable data collection and artificial intelligence policies requires policymakers and health care systems to respond to the diverse needs of communities in California and across the country. Ongoing dialogue and feedback, as seen in the OMB revision process, drives progress towards more inclusive data collection. C4BH looks forward to continuing these collaborative advocacy efforts to improve data collection and exchange to improve the well-being of all.