State of privacy consent management requires more collaboration, says Sequoia Project
The Sequoia Project’s Privacy and Consent Workgroup said it reviewed existing consent models and frameworks and other factors that may help providers achieve a state of computable consent – where computers exchange patient information or hold back portions based on selected privacy settings – in a whitepaper released Friday.
In it, the workgroup explores the strengths and deficiencies of healthcare data exchange frameworks, tools and approaches and also outlines policy and operational challenges.
WHY IT MATTERS
Sequoia Project, the U.S. Department of Health and Human Services recognized coordinating entity to advance health information sharing under the 21st Century CURES Act, said in a statement Friday that the new whitepaper is a first step to understanding existing consent efforts and regulations needed to make progress on healthcare interoperability.
In Moving Toward Computable Consent: A Landscape Review, the workgroup said that it explored standards-based, automations purporting to support health information exchange, protect privacy and respect individual preference on a national scale.
For this first deliverable, the workgroup said it leveraged vast insights from numerous state agencies, organizations and others in addition to the expertise of its members.
They “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,” Deven McGraw of Citizen Health, co-chair, said in a statement. “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.”
Key to making computable consent a reality are transparency and engagement, Dr. Steven Lane, chief medical officer of Health Gorilla, added.
The paper discusses data segmentation infeasibility through the lens of various approaches, like HL7’s Data Segmentation for Privacy, government-created standarized terminology data sets, state community consent frameworks and more.
“By publishing this landscape review of consent capabilities, we hope to spur a wider dialogue in the public feedback process,” Lane said.
The Sequoia Project is accepting feedback on the whitepaper through February 21.
THE LARGER TREND
The ability to manage patient privacy expectations and consent requirements has become more complex with healthcare providers operating within a realm of varying state privacy laws, such as with patient reproductive data.
Convened in January 2024, the workgroup considers health sector stakeholder needs and the implementation and operational aspects of consent management and data segmentation technologies.
In addition to improved patient care, consent is a key part of the health equity equation. Centralized consent management systems are an essential component of interoperability agreements between public health systems for sharing healthcare and other data to advance health equity, according to Daniel Stein, president of the non-profit advocacy organization, Stewards of Change Institute.
Patient consent “is the core of everything everybody is trying to do,” he previously told Healthcare IT News.
The ability to share informaiton at a granular level “is really a vexing, large problem,” he said.
“Healthcare organizations currently lack adequate technical solutions and implementation guidance to support gathering and acting on consent documents and patient privacy preferences,” the Sequoia Project’s workgroup concluded in its new paper on the state of consent management.
“More collaborative work is needed to improve, test and build operational tools for consent management.”
ON THE RECORD
“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,” Mariann Yeager, Sequoia Project chief executive officer, said in a statement.
“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.”
Andrea Fox is senior editor of Healthcare IT News.
Email: [email protected]
Healthcare IT News is a HIMSS Media publication.
