Clinicians, health IT professionals, and policy makers all want to protect patient privacy. This is a hard goal, made harder by the increasing pressures to open up data and share it for treatment and research purposes, and harder still by the proliferation of state laws on data privacy. These laws are only getting stricter and more detailed, and are fragmenting wildly even as the federal government tries to bring everyone together around standards.
The Sequoia Project, a nonprofit consortium, is dedicated to implementing data interoperability in health care, securely and respecting patient needs. In our recent interivew, we hear from two co-chairs of the Privacy and Consent Workgroup at The Sequoia Project: Mel Soliz and Kevin Day, where we learn more about these complex regulations and how their workgroup is providing guidance to make it simpler to navigate.
Soliz laid out the challenges created by proliferating laws, many of which focus on sensitive data in the areas of reproductive health, behavioral health, and genetics. The laws are written from a policy perspective and therefore are hard to translate into the clinical and technical terms needed for implementation.
Most clinical organizations that operate in multiple states have a single EHR system that must be programmed consistently. Thus, they generally conform to different state laws by making the most restrictive statute in one state apply to every patient in every state because their IT systems don’t allow for state differences.
For instance, a patient in one state might not be able to send data about their substance abuse to another clinician in that state because of laws in a different state imposing strict controls on the transmission of substance abuse PII.
Soliz called for “a common technical foundation to define categories of data” to help governments define their policy laws in terms that technologists know how to implement
Soliz and Day talked about the multi-stakeholder process that produces their guidelines. Participants include lawyers, technical experts, providers, application developers, privacy advocates, and policy makers. Day cited the contributions of day-to-day operations staff as particularly important, because ultimately they are the people who have to make things work.
In April 2025, the project published the white paper Moving Toward Computable Consent: A Landscape Review. Soliz describes it as covering a range of topics from policy challenges to implementation challenges, along with solutions that are being tested.
This month, the project published a guide that provides more guidance and lays out exactly what information is needed to support a health care data disclosure, which individuals and data are involved, the operational process, and even a sample disclosure form.
They invite stakeholders to join their working groups where they can help shape and improve the guidance that The Sequoia Project workgroup produces. Check out our interview with the co-chairs of The Sequoia Project’s Privacy and Consent workgroup to learn more.
Learn more about The Sequoia Project: https://sequoiaproject.org/
Learn more about the Privacy and Consent Workgroup: https://sequoiaproject.org/interoperability-matters/privacy-and-consent-workgroup/
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