CHCF reports say more incentives and regulation needed to encourage participation in statewide data sharing agreement

Assembly Bill 133, signed into law in July 2021, requires the California Health and Human Services Agency (CalHHS) to develop a data exchange framework that includes a single statewide data sharing agreement that would begin in June 2024. However, a new series of reports published by the California Health Care Foundation (CHCF) emphasize that “… a broadly defined mandate alone will not be sufficient to achieve ubiquitous participation in data exchange,” referring to similar cases in other states.

 

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The reports in the series outline several strategies to incentivize and encourage participation in the data exchange among California health care organizations, as well as design an overall effective statewide data sharing agreement. 

“Many data exchange arrangements are missing key stakeholders  — such as rural providers, health plans, community-based organizations, and behavioral health and state and county-based entities — and missing important types of data; for example, social determinants of health information,” one of the reports states. 

“The opaque maze of federal and state health privacy laws and regulations persistently inhibits many kinds of information sharing including, for example, the sharing of mental health and substance use disorder information, as well as exchange by smaller and traditionally disconnected health and human service organizations and county health departments.”

One strategy, according to a report in the series that details approaches to incentivize participation in the data exchange, is to create a permanent advisory council, similar to the Data Exchange Framework Stakeholder Advisory Group or the California Association of Health Information Exchanges, that will inform state action on data exchange-related issues. 

The report highlights that an advisory council “… can garner broad stakeholder input and support for prioritizing, shaping, and revising state policies on data exchange, and can also provide an avenue for stakeholder oversight of state-led data exchange programs and initiatives.”

Another strategy is to leverage state agencies’ rulemaking authority to require the reporting of electronic data (such as COVID-19 vaccination status) to the state, which would then make this data available to providers through the data exchange framework. By requiring the reporting of this data to the state, state agencies would be in charge of implementing the statewide data exchange, and would be able to prioritize methods of interoperability most critical to their goals and tailor specific requirements how they see fit. The report also notes that allowing state agencies to lead this process allows opportunities for public participation. 

Another outlined strategy is to commit state funding for data exchange infrastructure and service development, and to develop a sustainability plan that includes financial participation from the commercial sector and data exchange participants. The report says “… state resources can help providers overcome the interoperability cost barrier via grants, performance-based contracts, matching funds, or other financial mechanisms.”

Another report in the series provides several potential models for the data sharing agreement that will be implemented in June 2024. The models suggested in the report are listed below:

 

  • Trusted Exchange Framework and Common Agreement (TEFCA): “Trust framework and data sharing agreement to enable the exchange of basic clinical information under a common set of principles, terms, and conditions.”

 

  • Carequality Connected Agreement: “Nationwide interoperability framework to enable clinical data exchange between health information networks (e.g., Commonwell, eHealth Exchange), electronic health record vendors (e.g., Epic, Cerner, SureScripts), and other technology platforms and service providers.”

 

  • eHealth Exchange Data Use and Reciprocal Support Agreement (DURSA): “Nationwide legal framework and data sharing agreement that establishes responsibilities, obligations, and expectations for the exchange of clinical data between health information networks.”

 

  • California Trusted Exchange Network California Data Use and Reciprocal Support Agreement (CalDURSA): “Statewide trust framework and multiparty data sharing agreement establishing mutual responsibilities, obligations, and expectations of a peer-to-peer network for the exchange of clinical data. Modeled after federal DURSA.”

 

  • Model Modular Participants Agreement (MMPA): “Model data sharing agreement developed between an HIO and its participants, describing the services provided by the HIO and the data to be exchanged (generally clinical information among health care providers).”