Interoperability Matters

Privacy & Consent Workgroup

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.

Overview Webinar
Tuesday, July 28 | Noon - 1:00 p.m. ET

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.

Workgroup Purpose

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.

Propelling the Healthcare Community Forward

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.

Resources and Toolkits

Implement Now

Resource and webinar

Operationalizing Automated Consent:

Actionable Guidance for Health Care Providers, Payors, and Other Health Care Organizations
Whitepaper and Webinar Recording

Moving Toward Computable Consent:

Findings & Next Steps
Whitepaper and Webinar Recording

Guidance to States:

Legislating Technical Standard Definitions for Existing State Sensitive Health Data Laws

Initial Areas of Focus

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.

The Workgroup will focus initially on the following topics: 

Computable Consent

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.

Data Segmentation for Privacy

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.

A Patchwork of Challenges

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:

The Promise of Granular and Computable Consent

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.

Privacy & Consent Roundtable

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.

Initative Sponsors

Building on the Efforts of Others

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.

Workgroup Co-Chairs

Kevin Day

Cotiviti

Mel Soliz - profile image

Mel Soliz

Contexture

Workgroup Roster

American Health Information Management Association (AHIMA)

American Medical Association (AMA)

Assistant Secretary for Technology Policy (ASTP)

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)

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

Join the Workgroup

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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Download the Privacy and Consent Whitepaper

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