title: Developing Governance for Federated Community-based EHR Data Sharing.
abstract: Bi-directional translational pathways between scientific discoveries and primary care are crucial for improving individual patient care and population health. The Data QUEST pilot project is a program supporting data sharing amongst community based primary care practices and is built on a technical infrastructure to share electronic health record data. We developed a set of governance requirements from interviewing and collaborating with partner organizations. Recommendations from our partner organizations included: 1) partner organizations can physically terminate the link to the data sharing network and only approved data exits the local site; 2) partner organizations must approve or reject each query; 3) partner organizations and researchers must respect local processes, resource restrictions, and infrastructures; and 4) partner organizations can be seamlessly added and removed from any individual data sharing query or the entire network.
authors.affiliation: Institute of Translational Health Sciences, University of Washington, Seattle, WA ; Global REACH, University of Michigan, Ann Arbor, MI.
authors.forename: Ching-Ping
authors.initials: CP
authors.lastname: Lin
authors.affiliation: Institute of Translational Health Sciences, University of Washington, Seattle, WA.
authors.forename: Kari A
authors.initials: KA
authors.lastname: Stephens
authors.affiliation: Institute of Translational Health Sciences, University of Washington, Seattle, WA.
authors.forename: Laura-Mae
authors.initials: LM
authors.lastname: Baldwin
authors.affiliation: Institute of Translational Health Sciences, University of Washington, Seattle, WA.
authors.forename: Gina A
authors.initials: GA
authors.lastname: Keppel
authors.affiliation: Institute of Translational Health Sciences, University of Washington, Seattle, WA.
authors.forename: Ron J
authors.initials: RJ
authors.lastname: Whitener
authors.affiliation: Institute of Translational Health Sciences, University of Washington, Seattle, WA.
authors.forename: Abigail
authors.initials: A
authors.lastname: Echo-Hawk
authors.affiliation: Institute of Translational Health Sciences, University of Washington, Seattle, WA.
authors.forename: Diane
authors.initials: D
authors.lastname: Korngiebel