Important conversations about standards, incentives, and funding in the fifth DxF Stakeholder Advisory Group meeting

The fifth meeting of the Data Exchange Framework Stakeholder Advisory Group focused primarily on the current gaps in data exchange standards, provider identity management, and consumer data access––and how those gaps can create opportunities for innovation in the new Framework. 

California Health and Human Services Secretary Dr. Mark Ghaly began the discussion with a stark reminder of where California finds itself––and how it underscores the need for the Stakeholder Advisory Group’s work: “We’re in yet another difficult COVID period,” he said. “What we’ve experienced over the last six weeks is something many people expected to not go through again. Good news is that cases have started to stabilize, and our hospital impact, although tremendous and extreme…there is hope on that horizon as well.” 

He continued, “I thank all of you for pushing on equity, and for those communities who have been hit hard on the front lines of the pandemic. [The DxF] “is linked to so many other efforts. We can’t move forward as a state without this improved, broad health and human services delivery system.”

With the Secretary’s reminder in mind, the discussion began with an overview of the gaps and related opportunities in standards and capacity, identity management, and consumer access: 

As participants noted during the discussion of Gap #1, COVID-19 has underscored the importance of the social determinants of health (SDOH)––as environmental, social, and demographic factors have had a clear demonstrable effect on the infection rates and severity of the virus in different communities. At the same time, as referenced on the following slide, SDOH data collection efforts remain nascent in California; we believe California has a major opportunity to learn from other states’ SDOH data collection efforts, as we discussed in this issue brief.

Much of the discussion in this section revolved around the importance of standards––which is only part of the equation. As Claudia Williams noted during the discussion, “I don’t think a standard, sadly, creates the kind of quality we want; it defines what that could look like. There are some great examples of how data-sharing incentives have dramatically improved the quality of the data.”This relates to the presentation we enjoyed in a recent coalition meeting from healthcare leaders in Michigan, which covered their successes in incentivizing data quality in their state.

Another key insight came during the discussion of Gap #3, “Consumer Data Access.” The presenters rightly assessed that right now, Caliifornians consistently face challenges accessing their health records in a convenient, safe, and timely manner. We strongly support the description of the opportunity this presents us, and California: “Consider adopting policies to ensure consumers have meaningful access to their longitudinal health information across all health care organizations subject to AB 133.”

This consumer-centered approach, combined with universal participation from “all health care organizations,” is indeed the right way forward. We were as enthusiastic about this piece as Mark Savage, who said, “Access to longitudinal health info is a key friction point. This is huge; it’s the kind of thing that Californians have been trying to do for decades. The focus on bidirectional access will make a major contribution to improving quality of care for Californians.” 

One of the most important factors about the fifth DxF meeting was contextual: the fact that Governor Newsom’s proposed budget contained no explicit funding for the eventual Framework (read our statement about the budget here). When this issue was raised by a group member, we were glad to hear John Ohanion, Cal HHS Chief Data Officer, suggest that this funding may be included in the Governor’s May revised budget. 

It goes nearly without saying that without dedicated funding to put the Framework to use, all of the great conversation and work being done in the DxF process will be for nought. We were heartened to hear that dedicated funding may be coming––and, after five meetings, are eager to see the final Framework solidified, and enacted.


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