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What the New PHNIX and Existing State Databases/Networks
Mean for Privacy and Choice in California

In our update yesterday, AVFCA outlined how the United States has withdrawn from the World Health Organization while California has chosen to participate in a WHO-coordinated outbreak response network. This reflects a broader shift: California is increasingly building its own public health governance and coordination systems outside traditional federal frameworks.

PHNIX: One of the most significant of these efforts is the Public Health Network Innovation Exchange (PHNIX). Governor Newsom launched PHNIX in California to modernize and coordinate public health systems at the state, national, and global levels (https://www.cdph.ca.gov/Programs/OPP/Pages/publichealth4all/phnix.aspx)

According to CDPH, PHNIX will focus on strengthening innovation, collaboration, and communication while expanding technological and data systems. In practice, this will involve increased data coordination, expanded monitoring tools, and new governance and funding frameworks. Governor Newsom has engaged former federal public health leaders, including former CDC Director Dr. Susan Monarez, former CDC Chief Medical Officer Dr. Debra Houry, and public health communicator Dr. Katelyn Jetelina, to help shape California’s long-term public health strategy.

Understanding how these systems are being built and connected is essential for families who care about privacy, transparency, and informed consent. This initiative is presented as “modernization,” but it also represents a major expansion of centralized public health data infrastructure that may lay the groundwork for future digital identification and monitoring systems.

How PHNIX Fits into California’s Broader Strategy: PHNIX will operate alongside other state-led initiatives and databases.  This includes the West Coast Health Alliance and the Governors Public Health Alliance, forming an increasingly integrated public health ecosystem built around shared data, aligned guidance, and coordinated policy frameworks.

It also includes the California Immunization Registry (CAIR) which requires reporting of all vaccines, with no full opt-out options. Immunization records are permanently stored and broadly accessible within public health networks.  It also includes the Cradle to Career data system that tracks education, social services, and workforce outcomes. While an opt-out technically exists, families must contact each participating organization individually, making meaningful withdrawal difficult in practice.

Together with PHNIX, these systems will create interconnected, long-term digital records that can follow individuals from birth through adulthood, often without clear consent or easy exit options.

Privacy, Data Security, and Public Trust: California has some of the strongest consumer privacy laws in the nation, but these protections generally do not apply to government databases. As a result, many Californians, including undocumented residents and other vulnerable populations, have legitimate concerns about having personally identifiable information and medical records stored in large systems that may be accessed by multiple agencies or outside contractors.

Past data breaches, cyberattacks, and improper data sharing have exposed millions of Americans’ health records. The California Department of Public Health has also provided access to CAIR data to outside marketing firms for vaccine outreach, raising additional questions about how sensitive medical information is used and shared.

These realities underscore the importance of strong safeguards, transparency, and clear limits on how personal data is accessed, stored, and distributed, including meaningful opportunities for individuals to opt in, opt out, and control how their information is used.

Why This Matters: PHNIX, CAIR, Cradle to Career, and regional public health networks reflect a broader shift toward centralized, data-driven governance. This model depends on continuous data collection, shared databases, and long-term monitoring systems.

Without strong legal protections, clear limits, and independent oversight, these systems can expand in scope and purpose over time. For families who value medical autonomy, personal data protection, and limited government surveillance, this raises legitimate concerns, especially as this infrastructure is being built before meaningful safeguards are in place.

AVFCA’s Advocacy and How You Can Help: AVFCA believes innovation and public health preparedness can coexist with privacy, freedom, and constitutional values, but only if safeguards are built in from the start. AVFCA is actively working to promote meaningful consent mechanisms, clear data protections, independent oversight, and simple, enforceable opt-in and opt-out rights across California’s major public databases, including PHNIX, CAIR, and Cradle to Career.

Action Alert: We encourage community members to share these concerns directly with Governor Newsom by contacting his office here: https://www.gov.ca.gov/contact/. When writing, you may wish to ask that California establish a simple, centralized opt-in and opt-out process for PHNIX, the California Immunization Registry, and Cradle to Career, so that individuals and families can easily control how their personal and medical information is collected, shared, and retained.

Suggested wording: “I am asking that California create a clear, simple, and statewide opt-in and opt-out system for PHNIX, CAIR, and Cradle to Career. Families, including immigrants and vulnerable populations, should have meaningful control over whether their personal and medical data is included in these systems and how it is used. Strong privacy protections and informed consent are essential for public trust.”

AVFCA will continue monitoring PHNIX, related partnerships, and data governance policies. We will advocate for reforms that protect both health and civil liberties, and we will keep our community informed as these systems evolve.

If you found this update helpful and appreciate the work A Voice for Choice Advocacy is doing to protect privacy and informed consent, please consider supporting us with a donation.

If you found this information helpful and appreciate the work A Voice for Choice Advocacy is doing, please support us by making a donation today.

Together we can make change happen!

C

Christina Hildebrand
President/Founder
A Voice for Choice Advocacy, Inc.
[email protected]
www.AVoiceForChoiceAdvocacy.org