California has made progress building health data networks across the state for years now — data systems that securely deliver information on your medications, health history, and hospitalizations in real time between your different healthcare providers (imagine never having to fill out that clipboard before your medical appointment again!). While those technology systems are significantly better than they were 10 years ago, they remain fragmented, often leaving behind the under-resourced, less technologically sophisticated providers; social service and community organizations; and public health agencies.
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Fortunately, the state has recognized how critical health data infrastructure is for achieving CalHHS’s vision for “A Healthy California for All” and provided the tailwinds we need to propel us toward a more robust and seamless health data infrastructure for the entire state. Starting January 2024, most healthcare organizations in California, including health plans, will be required to exchange health information with each other. We believe the best way to enable such broad-scale data sharing on such an aggressive timeline is to invest in and leverage the many California nonprofit community health information organizations (HIOs) that are purpose-built for and already doing this work across every county.
Why does health data matter? We know that data is the way to better health and healthcare, including controlling costs and improving safety. According to the National Academy of Medicine, during the COVID pandemic, “both data and a lack of data illuminated profound shortcomings that affected health care and health equity.” Yet a bright spot “was a surge in collaboration among data holders in public health, health care, and technology firms, suggesting that an evolution in health data sharing is visible and tangible.” For California’s ambitious plans around Medi-Cal reform (CalAIM) to succeed, healthcare leaders across the state need a reliable feed of timely, accurate information on what clinical or social care people really need and how they can best be helped. For example: knowing when someone has been in the hospital with a stroke and is going to need extra assistance with recovery after they go home, delivered in a specific language. Another example: identifying patients with chronic conditions who are at high risk for COVID-19 complications and ensuring they get vaccinated by specifically addressing barriers to care, such as transportation to a doctor’s office.
Why are HIOs so crucial? California’s nonprofit HIOs form the ideal backbone infrastructure for a successful Data Exchange Framework that equitably meets state goals. These organizations receive health information from a wide range of providers, labs, pharmacies, health plans, and other community stakeholders; match it to the appropriate person across all the disparate source systems; monitor not only who needs that information, but also who is authorized to access it; and then provide it securely and privately to the authorized users. In addition to the technical feats performed by California’s HIOs every day, they share an impressive public service-oriented history focused not only on meeting the local needs of the many diverse communities they serve (such as community health centers, small practices, and underresourced safety-net providers that disproportionately serve Medi-Cal), but also of coming together during times of emergency and catastrophe to ensure first responders, public health, California Emergency Medical Systems (EMS), and others can respond and take action in the most informed way possible to protect and serve the lives of Californians.
So what’s the hang-up? There are other players in the health data exchange space, including “national networks” used primarily by large health systems with the biggest (and often most costly) EHRs. These networks have made significant progress enabling the exchange of health information among their participants and are an important part of the health data ecosystem. However, these provider-centric networks have their limitations — they do not support real-time event notifications that providers need to better treat their patients, health plans do not participate in them, and smaller providers and community-based organizations that don’t have the budget or the EHRs to connect to them are left out (by most estimates, there are more than 500 ambulatory EHR vendors in the market).
California’s ambitious and transformative health goals require more than national networks can currently provide, and California can’t afford to wait for them to catch up. To be successful, California’s HIOs will need to do the heavy lifting to ensure the entire health and social care system, including health plans, skilled nursing and behavioral health providers, community-based organizations, counties, and many others are not left out of California’s health data sharing ecosystem. This will require us to directly fund the cost of operating and maintaining these nonprofit entities that deliver equitable and inclusive infrastructure across the state.
As we build a healthy California for all across our vast and complex state, let us ensure digital equity for all providers by advancing a “health data safety net” that extends beyond traditional healthcare to support whole person health and wellness.
Erica Galvez is CEO of Manifest MedEx, California’s largest nonprofit health data network, delivering health records for nearly 32 million residents.
Ali Modaressi is CEO of Los Angeles Network for Enhanced Services (LANES), a nonprofit regional health information organization (HIO) serving more than 500 health systems, hospitals, and clinics that administer care to 11 million residents of Los Angeles County.