Data Governance and Data Sharing Agreements: Lessons from the Beacon Communities

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The Issue

Widespread sharing of electronic health information holds great promise for improving the quality of health care and reducing its cost. The partners involved in the exchange of patient data at the community level can include providers, laboratories, health plans, government agencies, and health IT vendors, among others. To maintain patient privacy and protect market competition, these diverse partners must draw up so-called data sharing agreements (DSAs) that determine what data can be shared, with whom, under what conditions, and for what purposes. Commonwealth Fund–supported researchers identified best practices to help communities form these agreements and maximize the benefits of data exchange.


What the Study Found

This study focused on the DSAs negotiated by six communities participating in the Beacon Community Cooperative Agreement Program, a federally funded program designed to demonstrate how health IT can be leveraged to improve care and reduce costs. The sites, whose leaders were also coauthors of the study, were located in Bangor, Me., Greater Cincinnati, Crescent City, La., Keystone, Pa., Southeast Michigan, and Western New York. Even though each community had a diverse range of partners and complex legal and technical challenges, the researchers were able to identify several universal best practices for developing DSAs. These include engaging stakeholders in shared objectives, developing trust, communicating the value of data sharing, starting small, and paying attention to partners’ concerns.


Conclusions

Communities already engaging in data sharing can help others identify best practices by contributing sample DSAs and other resources to publicly available repositories. Policymakers can help with new guidelines and regulations that offer solutions to common data governance challenges.

Publication Details

Publication Date: June 9, 2014
Authors: Claudia Allen, Terrisca R. Des Jardins, Arvela Heider, Kristin A. Lyman, Lee McWilliams, Alison L. Rein, Abigail A. Schachter, Ranjit Singh, Barbara Sorondo, Joan Topper, and Scott A. Turske
Contact: Claudia Allen, General Counsel and Chief Privacy Officer, Greater Cincinnati HealthBridge, Inc.
E-mail: callen@healthbridge.org
Summary Writer: Naomi Freundlich
Citation:
C. Allen, T. R. Des Jardins, A. Heider et al., "Data Governance and Data Sharing Agreements for Community-Wide Health Information Exchange: Lessons from the Beacon Communities," eGEMs (Generating Evidence and Methods to Improve Patient Outcomes), 2014 2(1):Article 5.
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