The Sequoia Project's Privacy and Consent Workgroup has released a comprehensive whitepaper that delves into the intricacies of achieving computable consent. This document, published recently, evaluates existing models, frameworks, and tools designed to facilitate the secure exchange of patient information while respecting privacy settings. The workgroup examines both the strengths and limitations of current healthcare data exchange methods and highlights policy and operational challenges. By reviewing these elements, the whitepaper aims to foster better interoperability and compliance with evolving privacy regulations.

In its exploration of computable consent, the workgroup identifies transparency and stakeholder engagement as crucial components. The paper scrutinizes various approaches to data segmentation, including standards developed by HL7 and government-mandated terminology datasets. It also considers state-specific community consent frameworks. According to Deven McGraw of Citizen Health, co-chair of the workgroup, combining diverse perspectives from consumer, clinical, technical, policy, and operational viewpoints enriches the discussion and promotes future collaboration. Dr. Steven Lane of Health Gorilla emphasizes that making computable consent a reality hinges on these factors.

The whitepaper underscores the complexity of managing patient privacy expectations and consent requirements, especially given the varying state privacy laws. For instance, issues surrounding patient reproductive data have added layers of complexity. The workgroup, convened in January 2024, focuses on addressing stakeholder needs and improving the implementation of consent management and data segmentation technologies. Daniel Stein, president of the Stewards of Change Institute, notes that centralized consent management systems are vital for advancing health equity through interoperability agreements between public health systems.

Patient consent remains a cornerstone of efforts to enhance healthcare interoperability. The ability to manage and act on consent documents and patient privacy preferences at a granular level is a significant challenge for healthcare organizations. The whitepaper concludes that more collaborative work is essential to improve, test, and develop operational tools for effective consent management. Mariann Yeager, CEO of the Sequoia Project, acknowledges the complexity of privacy and consent issues in health IT interoperability, particularly as health information exchange increases and sensitivity around health data grows.

The publication of this landscape review aims to stimulate broader dialogue during the public feedback process. The Sequoia Project invites comments on the whitepaper until February 21, signaling a commitment to refining and advancing the principles of computable consent in healthcare.