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.
Join The Sequoia Project for a free, public webinar introducing “Operationalizing Automated Consent: Actionable Guidance for Health Care Providers, Payers, and Technology Vendors.” Developed through the Interoperability Matters Privacy & Consent Workgroup (PCWG), this resource offers a practical starting point for organizations exploring automated, or computable, consent approaches.
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 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.
To ensure the whole community is working together across Privacy and Consent initiatives, we have formed this coalition. We are thankful to our sponsors, AHIMA and Oracle Health. To learn more or get involved, contact InteropMatters@sequoiaproject.org.
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.
Cotiviti
Contexture
American Health Information Management Association (AHIMA)
American Medical Association (AMA)
Azuba
Blue Cross Blue Shield Association (BCBSA)
Cambridge Health Alliance
Ciitizen
Consultant, Senior Privacy and Integration Specialist
Contexture
Cotiviti
Contra Costa Health
Datavant
DirectTrust
Epic
findhelp
Health Gorilla
Henry Ford Health
Indiana Health Information Exchange (IHIE)
Kno2
Marble
MRO Corporation
Netsmart
New Jersey Innovation Institute (NJII)
NextGen
OCHIN
Office for Civil Rights (OCR)
Office of the National Coordinator for Health Information Technology (ONC)
Oracle Health
Orion Health
Point-of-Care Partners
Serving Communities Health Information Organization (SCHIO)
Social Security Administration (SSA)
U.S. Department of Veterans Affairs
Verisma
YoCierge, Inc.
Zus Health
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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Interoperability Matters a public-private cooperative solving discrete health information exchange challenges through a variety of workgroups and initiatives. Learn More
Workgroup organized to assist understanding the barriers consumers face in accessing health information.
Workgroup organized to help propose and develop strategies to meet consumer healthcare needs.
Workgroup that targets improvements necessary to enable semantic interoperability of health information.
Workgroup focused on the on-the-ground approaches to facilitate information sharing.
Workgroup Inactive Workgroup that explores and recommends methods to improve interoperability amongst payers.
Workgroup that is committed to improving pharmacy interoperability.
Workgroup focused on supporting proper information exchange that protects consumers privacy.
Community of Practice focused on providing participants with best practices at the intersection of public health.
Committee is focused on facilitating and prioritizing the work of the Interoperability Matters Workgroups.
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TEFCA™, outlines a common set of principles, terms, and conditions to support the development of a Common Agreement that helps enable the nationwide exchange of electronic health information (EHI) across disparate health information networks (HINs).
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The Sequoia Project is convening privacy & consent advocates in recognition of various initiatives underway to ensure health data is exchanged with proper patient consent.
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