The Sequoia Project Publishes Review of Challenges and Mobilizes for Solutions
(Vienna, VA – April 24, 2025) – Today, The Sequoia Project, a trusted advocate to advance health information sharing, published the final Moving Toward Computable Consent: A Landscape Review. Authored by the industry and government experts of the Interoperability Matters Privacy and Consent Workgroup, the whitepaper incorporates stakeholder feedback received during the public feedback period for the previous draft, published January 2025.
“The workgroup’s findings highlight the current challenges and the urgent need for standardized and interoperable consent management approaches,” said Mariann Yeager, CEO of The Sequoia Project. “Particularly amid concerns over data privacy and the complex web of federal and state-level regulations, approaches to obtaining and managing consent today are extremely difficult, unstandardized, and may not accommodate individual privacy preferences.”
Drawing on expert input from across the healthcare ecosystem, this review uncovers the operational complexities of both enabling access to health information and honoring individual privacy preferences. It makes the case for more granular consent mechanisms to give individuals greater control over their data, while helping healthcare organizations build trust and support appropriate sharing of information.
This review is a vital resource for healthcare leaders and policymakers, illuminating the path toward a more person-centered and efficient healthcare system that aligns technical infrastructure with evolving regulatory demands through effective consent management.
“The Sequoia Project’s mission is to convene stakeholders on the thorny issues that are preventing us from achieving seamless, secure, and appropriate health information sharing,” Yeager said. “This workgroup of experts has laid the foundation for advancing implementable solutions to computable consent. It will continue its work, while The Sequoia Project is also exploring convening a coalition of organizations aligned with this mission.”
The Privacy & Consent Workgroup was formed in 2024, under the leadership of co-chairs Deven McGraw of Citizen Health, and Dr. Steven Lane, chief medical officer of Health Gorilla. Today’s publication is the culmination of a year’s worth of research, interviews, and case studies by the workgroup members, along with insights from numerous state agencies, organizations, and subject matter experts who contributed valuable presentations.
The Moving Toward Computable Consent paper and executive summary are available on The Sequoia Project’s website now, and stakeholders interested in the possibility of forming a coalition are encouraged to contact InteropMatters@sequoiaproject.org.
