During the AIDS epidemic, I served as San Francisco’s director of public health and witnessed the challenges sick patients faced when seeking care at local clinics. Physicians often spent precious time tracking down medical records that were scattered across systems, buried in paper files, or delayed by the need to share them via fax. These inefficiencies led to dangerous delays in care and worse outcomes for patients.
Decades later, despite technological advances, our health care system continues to struggle with fragmented, inaccessible information about our patients. These persistent data gaps are more than technical issues — they directly affect patient care and contribute to administrative waste that drives up everyone’s health care costs. This failure puts a huge burden on Californians to ensure that their health care and social service providers have the right information at the right time.
Electronic health information exchange significantly reduces administrative burdens and duplicative testing, according to research published by the California Health Care Foundation. This is especially problematic in emergency departments, where access to a patient’s history can reduce unnecessary CT scans, x-rays, and ultrasound imaging by up to 25%.
Massive Wasteful Health Care Spending
An influential study published in JAMA found that 20% to 25% of national health spending is wasteful. By applying that estimate to California’s health system, administrative inefficiency and duplicative testing account for $58 billion to $73 billion in wasteful spending annually. This is a major driver of high health care costs in California, pushing up premiums, deductibles, and out-of-pocket expenses for families while increasing costs to the taxpayers who fund vital public programs like Medi-Cal.
More than half of Californians report skipping or delaying care because of the expense, and nearly half of those people said their health worsened as a result, according to the 2024 CHCF California Health Policy Survey.
Consider Alex, a single parent working two part-time jobs with no paid sick leave benefits. When their son needs lab work, they must take him to multiple appointments because his previous test results aren’t available to the new provider. This means Alex loses wages from missing work twice, pays for childcare during both visits, and faces higher out-of-pocket costs for duplicate tests.
Behind the scenes, providers waste countless hours and resources trying to locate and transfer medical records. For families already stretched thin, such unnecessary expenses may force them to choose between medical care and other basic needs.
The impact is particularly acute for people with complex health conditions who require care from multiple providers. Without coordinated information sharing, a person managing diabetes, heart disease, and depression might receive conflicting treatment plans, duplicate tests, and medication interactions that worsen their conditions. This lack of coordination not only increases unnecessary suffering, it drives up costs through administrative burden and avoidable emergency visits and hospitalizations.
To serve every Californian, we must ensure that data flows securely and efficiently across physical and behavioral health systems, as well as social services. Everyone should be able to get the right care at the right time — no matter where they seek help or what coverage they have.
The Path Forward
California is making progress with the Data Exchange Framework, a historic initiative launched in 2021 that requires health care organizations, government agencies, and social service providers to share information to support treatment, care coordination, and public health. Nearly 4,500 organizations have already committed to participate.
But there is more work to do. Successful health information exchange needs strong leadership and public trust. This requires a governance structure that provides oversight and adheres to the fundamental principles of accountability, multi-stakeholder participation, and transparency. The governing body should have the ability to craft policies that hold stakeholders accountable, allow for broad and balanced stakeholder participation, and conduct public deliberations to ensure openness in decisionmaking.
We have seen this model succeed before. California has a history of establishing governance structures that drive quality and protect the public’s interests in entities such as the Office of Health Care Affordability and Covered California.
Thoughtful, inclusive governance is a prerequisite to meaningful reform. As California continues to advance statewide data exchange efforts, it can draw valuable lessons from both its own institutional successes and the experiences of other states. Michigan, Maryland, and New York have built strong governance models for data exchange with oversight that ensures transparency, patient privacy, and progress. Other states have solved these problems. Why shouldn’t we?
A Vision for a Better System
For California, the work ahead is complex, but the goal is clear: a state where every person’s critical health information moves securely and seamlessly to support their care — regardless of insurance, geography, or health status.
This is how we build a system that truly serves all Californians. We at CHCF are committed to helping make this vision a reality. Better data exchange is not a technical fix — it is an imperative for better and more affordable health care for all.
Authors & Contributors
Jessica Brandi Lifland
Freelance photographer
Jessica Brandi Lifland is a freelance photographer, instructor of journalism at City College of San Francisco, and mother. Her work with publications and nonprofits such as Operation Smile, Tostan, and the California Health Care Foundation has taken her all over the world, including West Africa, the Middle East, Kosovo, Burma, Haiti, and South America.
For two decades she has been photographing the National Cowboy Poetry Gathering and has been working on a long-term project documenting the lives of the cowboy poets of the American West in affiliation with the Western Folklife Center. She plans to make her project into a book.
