Copyright © 2025 The Sequoia Project. All rights reserved.
Established by the Interoperability Matters Leadership Council, the Privacy & Consent Workgroup will propel the healthcare community towards supporting proper information exchange that appropriately protects privacy.
While information sharing has become the standard in U.S. healthcare, the inherently sensitive nature of health information creates significant operational challenges for health information exchange. The Workgroup is considering the broader needs of public and private sector stakeholders, while focusing on implementation-level and operational aspects of privacy and consent related activities.
This Workgroup is a Community of Practice that convenes members of The Sequoia Project and subject matter experts focused on information exchange that appropriately protects privacy.
Given both the increase in health information exchange and the growing attention to the sensitivity of health information, the issues of consent management and data segmentation for privacy come to the forefront. Practical and universal solutions are needed to maintain and build on the growing momentum toward interoperability.
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.
Growing concerns and attention to the sensitivity of health information heightens the need for tools that allow individuals and data holders to identify information deemed particularly sensitive when sharing records.
The Sequoia Project’s Interoperability Matter’s Privacy and Consent Workgroup examined the current landscape of privacy and consent management in healthcare as a key factor in realizing the benefit of information sharing to improve healthcare quality, enhance outcomes, and drive innovation. Individuals want greater control over their health data and can harbor concerns about the privacy of their sensitive information. Health care providers and other data holders face both complex privacy rules and a lack of technical solutions for consent management, leading to administrative burdens, barriers to information sharing, and limitations in effectively honoring individuals’ preferences.
Advancing automated solutions to granular consent would allow health care providers and other data holders to honor individuals’ preference over whether, when, and with whom to share sensitive information and comply with privacy rules. It would also decrease the use of “all or nothing” approaches that effectively reduce information sharing because data holders are forced to withhold all information if they cannot effectively segment and protect certain sensitive information while sharing other information needed to support health and care.
The Workgroup’s review revealed a complex web of federal and state privacy regulations and limited technical capabilities that hamper the ability to use consent as a tool to both honor individual privacy preferences and engage in appropriate information sharing. Key challenges include:
Granular consent is a key enabler for building patient trust and promoting greater participation in data-sharing initiatives. Granular consent allows individuals to specify what types of information should be shared, with whom, and for what purposes. By providing this level of control, healthcare organizations could empower individuals to make explicit and informed decisions about their data, thereby increasing their comfort level with data sharing and ultimately leading to improved care and outcomes.
Collaborative efforts would catalyze the development of effective consent management and data segmentation solutions that enable a healthcare system that is both interoperable and supportive of individual privacy preferences. Advancing towards standardized, secure, and trustworthy models of granular consent management will require coordinated action. Healthcare leaders, technology innovators, patient advocates, and policymakers all play a role in shaping solutions that are standardized, interoperable, respect privacy preferences, support regulatory compliance, and lead to better care outcomes. The Sequoia Project also wants to hear from interested organizations to consider forming a new coalition. To learn more or get involved, contact InteropMatters@sequoiaproject.org.
Complete the form below to gain access to the Privacy and Consent Workgoups recently released whitepaper.
The Workgroup will begin with a landscape review to understand existing efforts and regulations. The intent is to leverage and learn from the efforts of others with a focus on identifying and addressing implementation concerns.
Health Gorilla
Ciitizen
American Health Information Association
American Medical Association
Assistant Secretary for Technology Policy
Azuba
Blue Cross Blue Shield Association
Cambridge Health Alliance
Ciitizen
Contexture
Consultant, Senior Privacy and Integration Specialist
Contra Costa Health
CRISP Shared Services
Datavant
DirectTrust
Edifecs
Epic
findhelp
HCA Healthcare
Health Gorilla
Hello Heart
Henry Ford Health
Indiana Health Information Exchange
Kno2
Marble
MRO Corporation
Netsmart
New Jersey Innovation Institute
NextGen
OCHIN
Office for Civil Rights
Oracle Cerner
Orion Health
Serving Communities Health Information Organization
Social Security Administration Liaison
Surescripts
U.S. Department of Veterans Affairs
Velatura HIE Corporation
Verisma
YoCierge, Inc.
Ready to drive the healthcare community forward? Save your seat – Registration is open until 11/30/23.
Sequoia Project members and subject matter experts are eligible to participate. Complete the form today to be contacted about joining this vital workgroup.
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Copyright © 2025 The Sequoia Project. All rights reserved.