Following a yr marked by notable regulatory adjustments and new frameworks on well being knowledge sharing throughout the U.S., California has applied main initiatives, together with the California Knowledge Change Framework (DxF) and California Advancing and Innovating Medi-Cal (CalAIM). These developments are reimagining how well being and more and more social service info flows throughout suppliers, payers, and community-based organizations (CBOs), setting the stage for change that would ripple throughout the nation.
Whereas these developments supply momentum, additionally they convey distinctive challenges. Taking a look at California’s headwinds and tailwinds will help make sense of the place we’re, what boundaries lie forward, and what components shall be important for sustainable knowledge change on this state, in addition to different states, as they construct out their knowledge sharing infrastructure.
Tailwinds in California
Over the previous yr, California has laid the groundwork for extra well being knowledge change via initiatives like CalAIM, aimed toward dramatically and broadly bettering well being outcomes for Californians, and the DxF, supposed to allow applications like CalAIM by rising well being and social providers knowledge sharing throughout the state.
Recognizing the necessity for whole-person care — care that doesn’t rely solely on the medical care supply system to enhance well being outcomes — CalAIM strives to deal with wants like housing, transportation, meals, and private look after a spread of high-priority populations, together with foster youngsters and people concerned within the justice system. Doing so requires understanding each population-level and particular person wants after which deploying multidisciplinary groups to offer help and providers to fulfill these wants, a lot of that are social in nature. CBOs and social service businesses develop into not solely essential service suppliers, but additionally important knowledge buying and selling companions with conventional medical care supply programs. CalAIM’s strategy requires intensive knowledge infrastructure to help extra intensive knowledge sharing, together with behavioral well being and health-related social knowledge, as a way to streamline care coordination and enhance outcomes for Medi-Cal’s most susceptible members.
On the similar time, the DxF mandated that almost all healthcare organizations share well being and social service info (HSSI) by early 2024. The DxF calls for knowledge sharing past what’s required in federal certification for digital well being data and knowledge blocking laws; its large scope incorporating social service info is critical given the state’s transformational ambitions in applications like CalAIM. The DxF is “expertise agnostic,” that means it doesn’t require participation in a single community or use of a selected expertise for change. It’s as an alternative supported by 9 distinct and unaffiliated voluntary certified well being info organizations (QHIOs) that play a essential position in its success, offering knowledge change infrastructure and facilitating safe and acceptable knowledge sharing between DxF individuals throughout the state. The DxF emphasis on interoperability between and past HIPAA-covered entities demonstrates the big-picture pondering required to help whole-person care and cross-entity collaboration.
These coverage strikes, and the funding behind them, create important tailwinds throughout the state, propelling and scaling knowledge sharing a lot quicker than it could occur by itself. But there are additionally distinctive challenges in California which can be essential to acknowledge when wanting on the implications of broader knowledge change nationwide.
Headwinds and knowledge sharing boundaries
One notable problem with the DxF is the shortcoming to implement compliance, leaving participation largely as much as particular person organizations. This has resulted in uneven progress; as an illustration, in accordance with the Middle for Knowledge Insights and Innovation (CDII), which oversees the DxF, roughly 65% of the DxF Participant Listing stays incomplete, leaving many DxF individuals and QHIOs unsure about the best way to change knowledge with one another. CBOs, whereas desperate to take part (though not required), usually don’t fall underneath HIPAA, complicating safe knowledge change of protected well being info with these important companions. Moreover, knowledge high quality and provenance points persist, elevating questions concerning the reliability and traceability of shared info.
The success of the CalAIM program depends on sharing complete and correct well being and social knowledge, which stays troublesome attributable to technical and policy-related boundaries. For behavioral well being knowledge, for instance, there are various interpretations of what can legally be shared, creating uncertainty and elevating the chance of exposing delicate info tied to social stigma. Social knowledge requirements are additionally nonetheless evolving and lack federal necessities, which have slowed adoption and help. CBOs are sometimes under-resourced and will not have the expertise to help knowledge sharing on the scale wanted. Furthermore, the absence of a common consent administration system for non-HIPAA-covered entities complicates constant and dependable privateness safety. As social knowledge sharing expands, role-based expertise could assist management knowledge entry, however it raises questions on who ought to determine the suitable knowledge to share — a essential consideration for nuanced circumstances, like whether or not housing suppliers want detailed details about a affected person’s well being circumstances.
Though knowledge exhibits individuals are usually prepared to share delicate info when requested immediately and knowledgeable about its use, privateness and safety of delicate info stay a giant consideration and key concern nationwide. For instance AB 352 introduces essential privateness protections for people looking for gender-affirming care, abortion providers, and contraceptive choices in California, together with safeguards towards out-of-state prosecution for individuals who journey to the state for such providers. The legislation restricts the sharing of medical info associated to those delicate providers, guaranteeing entry just for licensed people. Nevertheless, this knowledge exists throughout a number of components of structured and unstructured affected person data — remedy lists, medical notes, procedures, and diagnoses — making it difficult to isolate and constantly shield in follow. Limiting the change of this knowledge over nationwide well being info networks to adjust to out-of-state knowledge sharing limitations, which many California well being programs depend on, will result in much less complete data in comparison with knowledge exchanges inside an in-state community. This presents a trade-off between safeguarding privateness and sustaining full, coordinated care throughout programs.
A California testing floor for different states
With each headwinds and tailwinds to stability, California’s progress on well being knowledge change and utilizing this knowledge to enhance outcomes for essentially the most susceptible populations could present an instance for different states to think about. Discovering methods to navigate the complexity of a various state, expanded knowledge buying and selling companions, and far broader datasets that should embody delicate info, whereas safeguarding privateness and reinforcing steady safety, is a problem value taking over. Not each state is as giant and sophisticated as California, however all of them share lots of the similar challenges and alternatives in terms of coverage management and well being knowledge progress.
Erica Galvez is CEO of Manifest MedEx, California’s largest nonprofit well being knowledge community. Earlier than becoming a member of MX, Galvez led the HIE efforts at Aledade and likewise led the Workplace of the Nationwide Coordinator for Well being IT’s (ONC’s) Interoperability Portfolio.
