Data Exchange Is at the Heart of California’s Drive for Health Equity

New stakeholder agreement on guiding principles lays groundwork for crucial innovations

Illustration of people guiding a boat full of data
Illustration: Brian Stauffer

It has been five months of hard work, and there are another five months to go, but at the halfway point of California’s effort to develop its first Health and Human Services data exchange framework, it’s fair to say that we are making steady progress. We have the right experts and advisers at the table. While the next step may be the hardest — isn’t it always? — when we finish our task, we will have moved the state closer to a more equitable health care system that empowers Californians and providers with the data they need to drive better health outcomes for us all.

The state is on track to adopt a single data-sharing agreement by July that will govern the exchange of information across the health care landscape, involving hospitals, skilled nursing facilities, psychiatric treatment centers, health plans, managed care plans, and physician organizations. In January 2024, these major health care providers will be required to participate in the real-time exchange of health data.

This monumental and technically complex undertaking is essential for improving Californians’ health outcomes. Since the passage of AB 133 last year, a Stakeholder Advisory Group has been assisting the California Health and Human Services Agency (CalHHS), the agency’s Center for Data Insights and Innovation, and a dozen other state departments taking on this challenge.

Over the last five months, the stakeholders met regularly to identify barriers that need to be overcome for a Data Exchange Framework to succeed. Just this month, the group submitted to CalHHS Secretary Mark Ghaly, MD, MPH, a set of guiding principles (PDF) that will shape the development of the final Data Exchange Framework.

At the Core of the Data Exchange Vision

These principles put an emphasis on health equity and center our health information efforts on the needs of Californians. As I shared in this article in The CHCF Blog last September, these ideas are at the heart of our vision for the data exchange initiative. They also remain core elements of Governor Gavin Newsom’s overall approach to health and human services. In October, CalHHS updated its strategic priorities with the same goals (PDF), committing ourselves to promote equity, use data to drive action, see the whole person, cultivate a culture of innovation, and deliver on outcomes.

These aren’t just words, and they don’t exist in a vacuum. Governor Newsom’s January budget proposal, the California Blueprint (PDF), outlined a variety of opportunities this year to advance these ideas — from supporting the integration of health and human services programs through the CalAIM initiative to providing universal health coverage to all Californians.

We also know that for any of these efforts to succeed, providers will need to be able to share their patients’ health information with each other and with critical safety-net programs. These data will need to be usable, accessible, timely, and secure for the organizations providing care as well as individual Californians who will need to be able to use them to improve their lives and well-being.

This remains the focus of our data exchange initiative work, which will continue next week with a Stakeholder Advisory Group meeting to develop a governance system for data exchange. In April, we will update the legislature on our progress, and by this summer, we plan to finalize the policies and procedures that will allow health information to flow where and when it’s needed.

In the work ahead, we will be guided by our new Data Exchange Framework Guiding Principles. The detailed principles, available on the CalHHS website, are informed by AB 133 requirements, the Consumer and Patient Protection Principles for Electronic Health Information Exchange in California (PDF), and the Trusted Exchange Framework and Common Agreement (PDF) — the new draft federal health information exchange agreement from the Office of the National Coordinator of Health Information Technology. Here are the Data Exchange Framework Guiding Principles:

  • Advance health equity. We must develop and implement data exchange policies, processes, and programs to better understand and address health inequities and disparities among all Californians. Advancing health equity requires filling gaps in data completeness and quality for historically underserved and underrepresented populations and creating information-sharing infrastructure capable of consolidating and curating individual demographic and health information.
  • Make data available to drive decisions and outcomes. We must collect, exchange, and use actionable and timely information within and across health and human service sectors, to the greatest extent allowable by law, to better understand and manage health needs and manage conditions at the level of the individual, within our communities, and across our populations; assess the impact of our programs, operations, and payment arrangements so that we may identify opportunities and implement new strategies to improve quality, experience, and outcomes of care and services; and advance new payment models that support population health improvement and the delivery of value-based care.
  • Support whole-person care. We must promote and improve data collection, exchange, and use across health and human services organizations to gain greater insight into the needs of the people we serve and to better meet people’s whole-person care needs, to the greatest extent allowable by law and in alignment with federal and state standards.
  • Promote individual data access. We must ensure that all Californians and their caregivers have access to their electronic health and human services information.
  • Reinforce individual data privacy and security. We must collect, exchange, and use health and human service information in a secure manner that promotes trust, ensures data integrity and patient safety, and adheres to federal and state privacy law and policy.
  • Establish clear and transparent terms and conditions for data collection, exchange, and use. We must conduct all exchange and operations openly and transparently and communicate clear policies and procedures so that all Californians and the organizations that serve them can understand the purpose of data collection, exchange, and use.
  • Adhere to data exchange standards. We must adhere to federal, state, and industry-recognized standards, policies, best practices, and procedures in order to advance interoperability and usability.
  • Maintain accountability. All entities participating in the collection, exchange, and use of health and human service information must act as responsible stewards of that information and be held accountable for any use or misuse of information other than for authorized purposes in accordance with state and federal law and California’s Data Sharing Agreement and Data Exchange Framework policies.

If these principles inspire you, I hope you will join us as we work to develop a data exchange system that improves health outcomes for all Californians. Visit the CalHHS website to learn more about the data exchange framework, follow the Stakeholder Advisory Group’s progress, and contribute to this important conversation.

CHCF president and CEO Sandra Hernández and board member Liz Gibboney serve on the Data Exchange Framework Stakeholder Advisory Group.

Brian Stauffer

As a contributing artist to publications including the New York Times, Time magazine, the New Yorker, The Nation, Rolling Stone, Esquire, GQ, and over 300 others worldwide, Brian creates illustrations best known for their conceptual take on social issues. Through a unique combination of hand-drawn sketches, painted elements, and scanned found objects, Brian’s work bridges both the traditional and digital realms. His images are in the permanent collections of The Wolfsonian, Museum of the Society of Illustrators in New York, American Institute of Graphics Artists, and Art Directors Club of New York. Read More