Data Governance and Data Sharing Agreements for Community-Wide Health Information Exchange: Lessons from the Beacon Communities

PURPOSE: Unprecedented efforts are underway across the United States to electronically capture and exchange health information to improve health care and population health, and reduce costs. This increased collection and sharing of electronic patient data raises several governance issues, including privacy, security, liability, and market competition. Those engaged in such efforts have had to develop data sharing agreements (DSAs) among entities involved in information exchange, many of whom are “nontraditional” health care entities and/or new partners. This paper shares lessons learned based on the experiences of six federally funded communities participating in the Beacon Community Cooperative Agreement Program, and offers guidance for navigating data governance issues and developing DSAs to facilitate community-wide health information exchange. INNOVATION: While all entities involved in electronic data sharing must address governance issues and create DSAs accordingly, until recently little formal guidance existed for doing so – particularly for community-based initiatives. Despite this lack of guidance, together the Beacon Communities’ experiences highlight promising strategies for navigating complex governance issues, which may be useful to other entities or communities initiating information exchange efforts to support delivery system transformation. CREDIBILITY: For the past three years, AcademyHealth has provided technical assistance to most of the 17 Beacon Communities, 6 of whom contributed to this collaborative writing effort. Though these communities varied widely in terms of their demographics, resources, and Beacon-driven priorities, common themes emerged as they described their approaches to data governance and DSA development. CONCLUSIONS: The 6 Beacon Communities confirmed that DSAs are necessary to satisfy legal and market-based concerns, and they identified several specific issues, many of which have been noted by others involved in network data sharing initiatives. More importantly, these communities identified several promising approaches to timely and effective DSA development, including: stakeholder engagement; identification and effective communication of value; adoption of a parsimonious approach; attention to market-based concerns; flexibility in adapting and expanding existing agreements and partnerships; and anticipation of required time and investment.