California’s Data Exchange Stakeholder Advisory Group Mulls What Data Sharing Governance Might Look Like
Representatives at the sixth meeting of the state’s Data Exchange Framework Stakeholder Advisory Group (SAG) recently emphasized the importance of accountability and transparency in creating a governance structure for California’s Data Exchange Framework.
The panel engaged in a robust discussion about what potential governance models might look like, including whether a centralized governance body is needed at all.
Advisory Group Member Ali Modaressi, CEO, Los Angeles Network for Enhanced Services (LANES), expressed support for a governing body with public and private sector collaboration.
“The State has an important role in this, especially when it comes to financing and financing mechanisms and access to the federal funding, as well as enforcement,” he said. “It’s important to have that governing body that can establish trust and transparency and, as the State, step up and coordinate across these multiple stakeholders.”
Jonah Frohlich, Stakeholder Advisory Group facilitator and Managing Director of professional services firm Manatt Health, said that research on data exchange in other states demonstrates that “it takes a really strong leadership role and governance structure in order to advance data exchange models.”
States that have been most successful typically have a high-level official in a health and human services agency who can use rulemaking authority and access federal funding to advance the statewide health and human service data exchange, he said. Frohlich also said that successful states have multi-stakeholder committees to help provide oversight, set priorities, and craft policies for statewide health and human service data exchange.
The Stakeholder Advisory Group is charged with advising the state and the Health and Human Services Agency with a set of recommendations, including regarding the governance structures that would help guide policy decisions.
Advisory Group member, Sandra Hernández, President and CEO of the California Health Care Foundation, highlighted the need for a centralized governance body.
“This really is an unprecedented opportunity that we have. And if we look at where we are today, we have many different interests – some might argue many different silos –that have created a decentralized authority, with decision-making happening in somewhat of a utilitarian way,” she said. “I think that as we look at what we need to create today, we should recognize that we will need some very strong state leadership, and a role for state government in perpetuating and updating regulations and compliance with the framework and possibly also doing grant making to support medical groups who need to be able to participate.”
Hernández further emphasized, “We have very good models of governance in California, whereby we can set aside conflicts of interest, hold up a set of missions for a system that shares data in a way that serves consumers and patients first and foremost, that manages conflicts of interest, that provides transparency and accountability and a ton of input by the various stakeholders that we would want to comply with what we’re trying to achieve.”
Advisory group members also stressed the importance of not “reinventing the wheel” when establishing governance objectives.
“The work that’s been done already should serve somewhat as the model we can integrate,” said Advisory Group Member Rahul Dhawan, Associate Medical Director, MedPoint Management (representing America’s Physician Groups). “We shouldn’t reinvent the wheel, but instead really work to figure out the how to incorporate these diverse functions.”
Frohlich, meanwhile, shared 11 activities or functions that may be required for governance of a framework. They include:
- Harmonization of state law with federal law
- Development of and modifications to data sharing agreement policies and procedures
- Enactment of data sharing policies and procedures and requirements
- Review of Federal standards and national efforts impacting data exchange
- Enforcing and monitoring compliance with policies and procedures, requirements and guidelines
- Dispute resolution
- Program development and financing
- Identification and qualification of exchange intermediaries
- Communication and education
- Ongoing review of the data sharing agreement
- Coordinating with other branches of State and local government
At our recent meetings, Connecting for Better Health participants have raised critical questions regarding the issue of governance, among them:
- Harmonization of state law with federal law: Who will lead this work, and what laws need to be harmonize?
- Enactment of data sharing policies and procedures and requirements: When does the State estimate enactment, given that AB 133 requires the Data Exchange Framework to include policies and procedures?
- Dispute resolution: How will stakeholder complaints be handled, and what will be the methods of adjudication.
The importance of answering these questions was only underscored at the last meeting by Marko Mijic, Undersecretary, California Health & Human Services Agency, spoke at the meeting about the importance of the work the stakeholders are doing.
“The inequities and disparities that fueled the COVID-19 pandemic demonstrate to all of us that we have a lot more work to do to close those gaps. This work, in terms of connecting the data that we have in service of the people we’re trying to serve, is going to be fundamental in our ability to really address those inequities and disparities,” Mijic said. “I strongly believe that if we do not take this opportunity to do this, we will have missed a once in a generation opportunity to think differently about the way we do this work at the state and local level.”