California Creates New Health Information Exchange. How do we know if our personal data is safe?

At the start of the outbreak, I knew we had a problem. As a public health worker in San Francisco, I saw desperately ill people flooding health clinics daily. Doctors treated patients with the information they had, but were flying blind: Paper records of existing health conditions were scattered across the state. This has resulted in thousands of unnecessary tests, harmful delays in care and avoidable suffering.

It was in the 1980s, in the midst of the AIDS epidemic in San Francisco. Today, I see many of the same obstacles. Critical data gaps hamper everything from our response to the COVID-19 pandemic to our ability to quickly support Californians on the path to wildfires and other natural disasters. It is slowing progress in addressing mental illness, addiction and homelessness, and making it harder to achieve health equity across the state.

California has long been a leader in transforming health care, expanding coverage, and improving access to care and social services for its residents. But to be successful, all of these initiatives require a reliable, secure and reliable data exchange system so that patients and providers can access the health information they need, wherever and whenever they need it.

We are not there yet. Despite improvements to California’s healthcare system, most patient medical information in the state is still spread across hundreds of electronic health record systems, some of which are still paper-based. Islands of public health, social services and medical information remain locked in silos. Too often, health workers cannot share the information needed to provide better care.

After data system shortcomings hampered contact tracing and testing efforts early in the COVID pandemic, the Legislature passed AB133, signed by Governor Gavin Newsom, which committed California to developing a policy one-of-a-kind statewide for “health information exchange.” By July 1, the state is required to work with stakeholders — including hospitals, health plans, provider groups and consumer advocates, among others — to adopt a “one-size-fits-all framework for sharing of data” that will govern the exchange of health information between healthcare entities. and government agencies.

This major undertaking is fundamental to the integration of our painfully siled medical, behavioral health, and social service systems — and to the California Advancing and Innovating Medi-Cal initiative, the state effort to transform Medi- Cal.

By improving data flows between providers, plans and hospitals – and giving patients access to their medical records – this new system will enable more timely and targeted care in a crisis and every other day. This will impact California’s ability to respond to major challenges, from homelessness to rising health care costs.

Over the past year, the Newsom administration has worked with a stakeholder advisory group (full disclosure: I’m a member) to develop guiding principles to bridge disparate networks and fill critical gaps.

Last week, stakeholders began reviewing a first draft of the Data Exchange Framework, which will establish the “rules of the road”, defining what information providers and social service organizations share with each other, how they share it and how they make sure it’s secure. .

Starting in 2024, all state health plans, hospitals, physician organizations, and clinical labs will be required to participate in this new data exchange — a major step toward improving patient care coordination. complex conditions, while giving patients access to real-time treatment, payment and healthcare transaction information.

However, for all of this to work, Californians need to be confident that their health information can be shared safely and see how data sharing improves their health.

So what can Sacramento policymakers do to help build that trust? Trust statewide data sharing to an independent, accountable, and transparent oversight board. Such a council shall be created by law. The board should be large enough to be representative and small enough to be nimble with clear and defined decision-making power. It would also need strong conflict of interest rules, a process for open public meetings, and opportunities for Californians to maintain a voice as the system evolves.

With almost every state expected to experience an increase in COVID-related deaths in the coming weeks, including California, getting a good health information exchange is now more critical than ever. Unless we act decisively, the next health emergency will leave us exactly where we have been for 30 years – with far too many people slipping through the cracks of a decentralized and disconnected system of medical care, health behaviour, substance abuse and social services.

The time has come. It’s time to embrace the lessons we’ve learned and put in place the data exchange infrastructure we need to support equitable health outcomes.

Dr. Sandra Hernández is President and CEO of the California Health Care Foundation.

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