title: Health data use, stewardship, and governance: ongoing gaps and challenges: a report from AMIA's 2012 Health Policy Meeting.
abstract: Large amounts of personal health data are being collected and made available through existing and emerging technological media and tools. While use of these data has significant potential to facilitate research, improve quality of care for individuals and populations, and reduce healthcare costs, many policy-related issues must be addressed before their full value can be realized. These include the need for widely agreed-on data stewardship principles and effective approaches to reduce or eliminate data silos and protect patient privacy. AMIA's 2012 Health Policy Meeting brought together healthcare academics, policy makers, and system stakeholders (including representatives of patient groups) to consider these topics and formulate recommendations. A review of a set of Proposed Principles of Health Data Use led to a set of findings and recommendations, including the assertions that the use of health data should be viewed as a public good and that achieving the broad benefits of this use will require understanding and support from patients.
authors.affiliation: Department of Bioinformatics, Columbia University, New York, New York, USA.
authors.forename: George
authors.initials: G
authors.lastname: Hripcsak
authors.forename: Meryl
authors.initials: M
authors.lastname: Bloomrosen
authors.forename: Patti
authors.initials: P
authors.lastname: FlatelyBrennan
authors.forename: Christopher G
authors.initials: CG
authors.lastname: Chute
authors.forename: Jim
authors.initials: J
authors.lastname: Cimino
authors.forename: Don E
authors.initials: DE
authors.lastname: Detmer
authors.forename: Margo
authors.initials: M
authors.lastname: Edmunds
authors.forename: Peter J
authors.initials: PJ
authors.lastname: Embi
authors.forename: Melissa M
authors.initials: MM
authors.lastname: Goldstein
authors.forename: William Ed
authors.initials: WE
authors.lastname: Hammond
authors.forename: Gail M
authors.initials: GM
authors.lastname: Keenan
authors.forename: Steve
authors.initials: S
authors.lastname: Labkoff
authors.forename: Shawn
authors.initials: S
authors.lastname: Murphy
authors.forename: Charlie
authors.initials: C
authors.lastname: Safran
authors.forename: Stuart
authors.initials: S
authors.lastname: Speedie
authors.forename: Howard
authors.initials: H
authors.lastname: Strasberg
authors.forename: Freda
authors.initials: F
authors.lastname: Temple
authors.forename: Adam B
authors.initials: AB
authors.lastname: Wilcox
mesh_terms: D003219:Confidentiality / Q000592:standards; D057286:Electronic Health Records / Q000592:standards*; D006291:Health Policy; D006801:Humans; D033181:Information Dissemination; D016134:Organizational Policy; D033283:Patient Access to Records; D010358:Patient Participation; D012955:Societies, Medical; D014481:United States
keywords: data governance; data quality; data use principles; health data use; public policy; stewardship