California's health information exchange (HIE) ecosystem remains largely fragmented, limiting the interoperability of social service, public health, and clinical data.
"California is a managed-care state, so there's a lot of delegation, which means there are organized provider entities," Timi Leslie, BluePath Health founder and president, said in an interview with EHRIntelligence.
While consolidation may appear to lend itself to interoperability, Leslie argued it has made statewide data exchange more challenging. Certain pockets of the state are engaging in health data exchange, while others are not.
"What we see now is just this mishmash of organized health information exchange across the state," she said. "There's so much siloing happening. It's almost like we start a new project from scratch, and we have repetitive investment."
However, that is set to change soon. Last July, the state legislature passed AB 133, which mandates California to create a statewide network for health data sharing.
"Given where we are today, it's a way to organize all of these different entities and align incentives and align the rules of the road and be able to have organized enforcement, compliance, and governance," said Leslie, who leads Connecting for Better Health, a coalition working on developing the statewide health data exchange in California.
In July, the state adopted a single data-sharing agreement (DSA) that will govern the exchange of information across the healthcare continuum among hospitals, skilled nursing facilities, psychiatric treatment centers, health plans, managed care plans, and physician organizations.
By January 31, 2023, stakeholders must sign the DSA governing participation in the CalHHS Data Exchange Framework. Once the Framework takes full effect on January 31, 2024, certain parties must exchange health data with other Framework participants.
Smaller providers, such as physician practices of fewer than 25 physicians and select specialty hospitals, will not be required to exchange data under the Framework until January 31, 2026.
The Framework includes two main components: (1) a single data sharing agreement to be executed by Framework participants and (2) a standard set of policies and procedures that Framework participants will follow.
"We're still sorting out how to have everyone play in the same sandbox," said Leslie. "From the coalition's standpoint, the network of networks needs to be organized. We need to have a level playing field and agreements that if I ask you for X, you're going to send me Y, and I can use it for X, Y, and Z."
Notably, the Framework outlines that data exchange must include social determinant of health (SDOH) information, such as access to housing and food. Beginning January 31, 2026, social service organizations, such as HHS agencies and nonprofits, are expected to participate in the Framework.
Leslie said that the inclusion of SDOH data should help ensure the HIE provides value for population health, public health, and health equity efforts.
"The pandemic exposed the lack of access to health and social service data by all entities that need it," she explained. "It starts with collecting better demographic data and then being able to move into more social driver data and having the capacity to not only record it once but update it over time, and be able to share the most recent status across those caregivers."
"I'm really proud that we are starting from the start there," Leslie emphasized. "As a state, I feel like we're playing catch-up in terms of our health information exchange capabilities, but having more equity principles from the start might give us an opportunity to leapfrog a bit."
Leslie noted that as the data sharing framework comes to fruition, it will be key to communicate with stakeholders about the community benefits of HIE.
"When you're talking to consumer advocacy groups that are looking at disparities across the population or looking at being able to better research in certain areas, it all comes down to having the data to be able to support achieving their aim," Leslie said.
"I think it's always been just anticipated and expected that it's there, but there's now a recognition that we can do so much better," she added. "Having access to good-quality data as the key aim of consumer advocacy groups will be really important as we go forward."
Additionally, Leslie pointed out that the HIE will help improve access to health data as California undergoes a Medicaid transformation.
"CalAIM is empowering our Medi-Cal managed care plans to better deal with social determinants of health, work with community-based organizations, and engage social services and pay them for those services," she explained. "There's a lot underway right now. We need to understand that AB 133 gives us these tools."
Connecting for Better Health held workshops this fall to gather input on the data sharing agreement from a diverse group of stakeholders, including social service organizations, and organize official comments to the state.
"I think we've been doing a really helpful job in putting surround sound around what the state's doing, keeping them accountable, and keeping the gas pedal to the metal, because we really need to move forward," Leslie said. "We can't let this stall."
Currently, the consequences of not executing the DSA or participating in the data exchange are unclear.
"Compliance enforcement is an area that we're hoping the state and the implementation advisory group tackles right away," Leslie said. "Right now, there is nothing in AB 133 that talks about incentives or penalties. I think with the lack of any legislation, it should be enforced through contracting."
"We also think that there needs to be a lot of transparency around who is signing it and who hasn't, and something the coalition can help to make sure that we raise the flag when there's those that aren't," she confirmed.