Data Governance and Data Sharing Agreements for Community-Wide Health Information Exchange: Lessons from the Beacon Communities
Purpose: The increased collection and sharing of electronic patient data raises several governance issues, including privacy, security, liability, and market competition. Those engaged in such efforts are developing 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 from 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.
Governance Challenge: 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.
Impact: Though these 6 Beacon Communities varied widely in terms of their demographics, resources, and health improvement priorities, together their experiences highlight strategies for navigating complex governance issues, which may be useful to other entities or communities initiating information exchange efforts to support delivery system transformation. The 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.
Legal and regulatory concerns, Structure and role of governance bodies, Data sharing approaches and considerations, Competitive marketplace, Stakeholder engagement and participation
Type of Governance Resource
Other Type of Governance Resource
Healthcare Setting(s) in which Data were Collected
Community health center(s), Community organization(s) (e.g. faith-based organization, etc.), Emergency department(s), Inpatient facility(ies), Long-term care facility(ies), Primary care or ambulatory clinic(s), Specialty clinic(s)
Electronic Health/Medical Records (EHR or EMR), Diagnostic data, Pharmacy databases, Claims, Patient Registries, Health Information Exchanges, Personal Health Records
Generalizability to Other Settings
The Beacon Communities profiled in this case study vary widely in geographic location, population size and demographics, stakeholder involvement, health IT adoption, and other factors that contributed to their approach to DSA development. The challenges faced by all the communities may be broadly generalizable to others developing governance models for data sharing (e.g. compliance with Federal laws such as HIPAA). Other community-specific challenges (e.g. State-specific laws regarding sensitive data; level of market competition vs. cooperation) may only apply to certain settings, in which case others can identify which Beacon Community was most similar to their own in order to anticipate and mitigate those specific data governance challenges. By comparing their community with those profiled here, others may avoid or minimize some of the challenges encountered by the Beacon Communities, which will facilitate the development of efficient, effective governance models for community-wide health data sharing.
This paper describes the experiences of six Beacon communities which varied widely in population size, demographics, setting, participating stakeholders, and other factors. These characteristics are described in Table 1 which may help readers determine which community is most similar to their own and how to apply the lessons learned accordingly.
Geographic scope type
Allen, Claudia; Des Jardins, Terrisca R.; Heider, Arvela; Lyman, Kristin A.; McWilliams, Lee; Rein, Alison L.; Schachter, Abigail A.; Singh, Ranjit; Sorondo, Barbara; Topper, Joan; and Turske, Scott A., "Data Governance and Data Sharing Agreements for Community-Wide Health Information Exchange: Lessons from the Beacon Communities" (2014). Governance Toolkit. 8.
Acknowledgement of Funders
Support for the development of this paper was provided through the Office of the National Coordinator for Health Information Technology’s Beacon Community Cooperative Agreement Program.
Creative Commons License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.