< + > Working Groups at The Sequoia Project Promote Data Exchange, Compliance, and Privacy

Getting patient data to the proper person—including doctors and the patients themselves—is a many-layered task involving standards, privacy protections, consent, and usability. In our recent interview, Mariann Yeager, CEO at a major nonprofit in health interoperability, The Sequoia Project, describes the organization’s continuing work and upcoming plans.

Several of The Sequoia Project’s working groups focus on the areas where interoperability needs to move forward. For instance, one expert panel is devoted to the key element of trust, seeing what other industries have done to increase trust among their users. Among the panel’s mandates are developing processes for monitoring and enforcing compliance with rules.

Another group of privacy experts has been meeting over the past 18 months to evaluate existing privacy protections—particularly state laws—and to implement standards for obtaining consent, which will also allow a move away from paper consent to tools that can be used online. Finally, the group wants to implement data segmentation, whereby patients can choose to release particular types of information while keeping other types confidential.

A group of consumer advocates is designing best practices to improve the individual’s experience and their access to data: removing impediments, helping them understand their rights, and making options clear to them.

The project has also published several guides on conforming to information blocking laws, which the administration is starting to enforce quite strictly.

The interview also covers two key government projects in interoperability: the Trusted Exchange Framework and Common Agreement (TEFCA) and the very recent CMA Aligned Networks. Yeager says the measures they call for are consistent with each other.

She says that although TEFCA is at an “early-stage roll-out,” it already involves 10,000 organizations with a combined 60,000 endpoints, and has seen a 600% increase in document exchange during a single month.

Another major project they are working on is to get the FHIR standard widely adopted. Yeager, looking into the future, predicted “FHIR-based exchange at scale” in 2026.

Check out our interview with Marianna Yeager from The Sequoia Project to learn more about the ways they’re making health data sharing more trusted and compliant.

Learn more about The Sequoia Project: https://sequoiaproject.org/

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