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.

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.

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.

Moving Toward Computable Consent: A Landscape Review

Executive Summary

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.

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.

A Call to Action

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.

Download the Whitepaper

Complete the form below to gain access to the Privacy and Consent Workgoups recently released whitepaper. 

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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

Steven Lane

Health Gorilla

Deven McGraw

Ciitizen

Workgroup Roster

American Health Information Association

American Medical Association

Assistant Secretary for Technology Policy

Atlas Health Hub

Azuba

Blue Cross Blue Shield Association

Cambridge Health Alliance

Ciitizen

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.

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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