Challenges remain in California’s effort to establish a statewide health data sharing system

California’s recent passage of AB 133 laid out a timeline for implementing the state’s  long-sought statewide health information exchange (HIE), but experts say the initiative — largely supported for its positive impact on health equity — is a much more challenging task than it may seem.

California has a history of fragmented health information sharing, according to Karen Ostrowski, principal strategist for data governance at the consulting firm Intrepid Ascent. She and her colleague, Mark Elson, PhD, principal at the firm, have been following the effort to establish a statewide health data sharing system for years.

 

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Ostrowski helped develop the California Association of Health Information Exchanges (CAHIE), a pro-statewide-HIE advocacy group. Elson currently serves on CAHIE’s Board.

Early on in the widespread HIE adoption effort, the state — recognizing HIE was primarily local — took a “lightweight approach to governing data exchange,” Ostrowski said. HIEs mostly self-governed themselves and, instead of moving forward with establishing a state-level HIE, like New York, California ultimately kept its system of fragmented HIEs.

These organizations with existing data sharing systems recognized the need for a statewide health information sharing infrastructure at the time, but were concerned about how it would be done, Ostrowski said.

As regional, private HIEs emerged in the aftermath of the HITECH Act in 2009 — which funded the increased use of electronic health records (EHR) across the country — the question of how to implement a statewide HIE became more complicated. Organizations questioned how the HIE infrastructures in which they’d already invested would be impacted.

“While many of the foundational components of governance were yet to be defined in the early days of HIE, there was — and continues to be — momentum amongst the existing organizations to work together and close the HIE ‘white space.’”

This year, Asm. Jim Wood sponsored a bill that would require the state to enact a statewide HIE. Elson explained that, contrary to the “soft mandate” in AB 133, Wood’s bill was much more specific in how the statewide HIE would be achieved, with the state stepping in and laying out specific requirements for its establishment.

The bill was turned into a two-year bill and will be pursued — perhaps with some changes — next session. While Wood’s legislative effort may be delayed, Gov. Gavin Newsom secured $2.5 million for “health information exchange activities” in this year’s budget. This provision was boosted by requirements outlined in the omnibus health trailer bill, AB 133.

AB 133 requires the California Health and Human Services Administration (CHHSA) to convene a stakeholder advisory group no later than Sept. 1, 2021, to evaluate potential ways to implement a statewide HIE. Using the advisory group’s input, CHHSA must recommend a plan of action to the California Legislature no later than April 1, 2022, culminating in an operative “California Health and Human Services Data Exchange Framework” no later than July 1, 2022.

“Specified entities” — which include general acute care hospitals and skilled nursing facilities — are required to sign a statewide data sharing agreement by Jan. 31, 2023, and have real-time, statewide data sharing in place through the framework by Jan. 31, 2024. Other facilities, like small physician practices and rehabilitation hospitals, are required to do so by Jan. 31, 2026.

Elson expressed that while this multi-year timeline might feel drawn out to some, it is quite aggressive up-front given the “significant lift” AB 133 requires from the state and stakeholders. While legislating a mandate for data sharing, AB 133 doesn’t specify the “what” or the “how,” he said, placing responsibility on CHHS and a stakeholder advisory group to generate recommendations for the long-term framework for HIE by April 2022, and a statewide data-sharing agreement by July 2022. 

“This big-tent approach absolutely makes sense for surfacing the best ideas and generating buy-in, but it will not be easy in the few months they will have.”

Elson said the final HIE California ends up with might not necessarily be a single, statewide system. Instead, it could be a similar model to New York’s, where the state establishes criteria and mandates the participation in data-sharing from different, regional HIEs.

“There are some potential win-win-win scenarios that I hope emerge through the CHHS-led stakeholder process that balance local decision-making with efficiencies of scale. It will take policy-making creativity to get the mix of carrots and sticks just right, but AB 133 gives California a chance to take a leap forward by focusing us on this task.” 

Ostrowski said one of the main challenges in consolidating so much health information are the numerous privacy laws that limit health data sharing. AB 133, she says, might address this.

“One promising impact that I hope this framework will have is addressing long-standing issues related to state privacy laws that have not kept pace with modern health care. In the absence of a legislative process to update the laws, this framework has the potential to resolve conflicts with differing legal interpretations that stymy appropriate data sharing and hopefully bring greater clarity to balancing individual privacy with making sure the right data is available wherever it is needed to care for individuals.” 

Abner Mason, founder and CEO of ConsejoSano, sees two main obstacles to implementation of a statewide HIE: insufficient funding and the need to bring already existing HIEs on board.

“There are about 15 regional HIEs in California, so we’re going to have to figure out how we tie those together in a way that allows for easy sharing of data.

That [$2.5 million] is not sufficient to put together a robust statewide health information exchange. The second issue is going to be funding. We’ve got to fund it [and] figure out the right structure for it…”

Elson agreed the initiative needs much more financial support, and anticipates this to primarily come from the 2022 legislative session. He said CHHSA is likely to use the $2.5 million allotted in AB 133 to support its development of the implementation plan with the advisory group. After CHHSA submits its recommendations to the legislature next year, more funding is likely to be dedicated to getting the infrastructure up and running.