Revisiting guiding principles in the third Data Exchange Framework Stakeholder Advisory Group meeting

When the Data Exchange Framework Stakeholder Advisory Group convened their third meeting on November 10, we were heartened to see a familiar set of guiding principles at the core of the discussion. Our coalition had, in prior weeks, elevated the “Consumer and Patient Principles for Electronic Health Information Exchange,” drafted in 2010, as a helpful place from which to start renewed conversations about the future of data exchange. Check out our more detailed blog post on those principles for more information.

Taking those principles as a jumping off point, John Ohanion presented the six boiled-down guiding principles for this group’s work: 

  • Advance health equity 
  • Make data available to drive decisions and outcomes 
  • Support whole person care 
  • Reinforce patient access, privacy, and security 
  • Adhere to data exchange standards
  • Establish clear and transparent data use

As John Ohanion said at the beginning of the meeting, the principles “are going to help us get our job done.” Mark Savage––who helped develop the original 2010 principles––said in reference to the importance of considering all the principles at once, “No one principle is going to solve all the problems. We need all the tools in our toolbox.” 

The group then discussed their reactions to the principles, in considering their utility as foundational to the group’s work. The direct questions asked examined whether or not these were the correct principles to build on; if they were accurately described; if any principles were missing; and if they should be prioritized. 

Through the discussion, there were 4 major conclusions the group reached in their discussion of the principles:

  • Principles should include extra level of detail, potentially incorporate operational and implementation aspects
  • Key consumer/patient-focused principles were left out of the new draft principles that should be considered (e.g., preventing misuse of health data, and accountability so that patients can trust that their data is well cared for)
  • There is a need to go beyond patient access to data to meaningful patient engagement
  • The Data Exchange Framework should decouple privacy from security

Next, the group moved on to discussing the major barriers to data exchange, which included technical infrastructure and standards (this broad category made up the majority of the barriers), financing and business operations, and data exchange policies. 

We found that the barriers matched up well with the 7 “key ingredients” our coalition established in a previous post:

Breaking the discussion down even further, the three biggest barriers the stakeholder group identified can be summarized as: 

  • Defining more consumer barriers around education and literacy
  • Account for funding and the sunset of federal HITECH funds
  • Harmonizing legal interpretations related to regulatory and policy barriers

Overall, our coalition was pleased to see that a set of principles we view as foundational to the future of health data exchange was a jumping off point for this group’s important and urgent work. Given this feedback, the coalition recommends adopting the 2010 consumer principles as they are very comprehensive, and place the consumer appropriately at the center of the discussion. 

While there is much to do to sharpen and deepen the agreed-upon principles, and overcome numerous barriers, we are optimistic about the Stakeholder Advisory Group’s ability to craft an equitable, sustainable, and successful future for health data exchange in California.


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