Moving Toward Computable Consent: A Landscape Review
(Vienna, VA –January 23, 2025) – Today, The Sequoia Project, a trusted advocate to advance health information sharing, published Moving Toward Computable Consent: A Landscape Review for public feedback. This whitepaper explains the importance of managing privacy and consent when sharing personal health information, scans the current landscape of challenges facing those entrusted with personal health information, enumerates existing solutions, and explores the strengths and deficiencies of these approaches. The public is encouraged to review and provide feedback by Feb. 21, 2025.
“As laid out in the findings of this report, privacy and consent are some of the most complex issues we face in health IT interoperability today, given the dramatic increase in health information exchange and the growing attention to the sensitivity of health information,” said Mariann Yeager, CEO of The Sequoia Project. “Patients and providers are trusting us to find approaches to computable consent and data segmentation to ensure secure and appropriate exchange of their most sensitive data.”
The publication of Moving Toward Computable Consent is the first step to understanding existing consent efforts and regulations, before developing recommendations. Today, those receiving requests for information must determine what level of exchange is permitted and when consent may be required. If an individual’s consent (or authorization) is required for sharing information in each circumstance, the process to obtain and electronically share consent in a computable format is not yet standardized.
The Interoperability Matters cooperative brings together experts from across the private sector and government in workgroups to identify, prioritize, and solve the most pressing challenges to health information exchange. In 2023, the Privacy & Consent workgroup was formed, led by co-chairs Deven McGraw of Citizen Health, and Dr. Steven Lane, chief medical officer of Health Gorilla. Today’s publication is the first deliverable of this workgroup. It leverages the collective expertise of the workgroup members, along with insights from numerous state agencies, organizations, and subject matter experts who contributed valuable presentations.
“The workgroup members and presenters generously contributed expertise that spanned consumer, clinical, technical, policy, and operational points of view so that we could present a unified view of a multi-faceted issue,” said McGraw. “Combining these diverse points of view in a single document enriches the conversation and promotes future collaboration to advance information sharing that honors individual privacy preferences.”
“By publishing this landscape review of consent capabilities, we hope to spur a wider dialogue in the public feedback process,” explained Lane. “This transparency and engagement will bring more stakeholders to the table as we shift the dialogue from today’s capabilities and problems to tomorrow’s innovative solutions.”
The Moving Toward Computable Consent and feedback form are available on The Sequoia Project’s website now until Feb. 21, 2025.
