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dc.contributor.authorDoshi, Jalpa A.
dc.contributor.authorHendrick, Franklin B.
dc.contributor.authorGraff, Jennifer S.
dc.contributor.authorStuart, Bruce C.
dc.date.accessioned2016-05-09T16:27:49Z
dc.date.available2016-05-09T16:27:49Z
dc.date.issued2016-03-31
dc.identifier.citationDoshi, J. A., Hendrick, F. B., Graff, J. S., & Stuart, B. C. (2016). Data, data everywhere, but access remains a big issue for researchers: A review of access policies for publicly-funded patient-level health care data in the United States. eGEMs (Generating Evidence & Methods to improve patient outcomes), 4(2), article 8, DOI: 10.13063/2327-9214/1204.en_US
dc.identifier.urihttp://hdl.handle.net/10713/5398
dc.description.abstractIntroduction: High quality research regarding treatment effectiveness, quality, and value is critical for improving the U.S. health care system. Recognition of this has led federal and state officials to better leverage existing data sources such as medical claims and survey data, but access must be balanced with privacy concerns. Methods: We reviewed and catalogued data access policies for a selection of publicly-funded federal and state datasets to investigate how such policies may be promoting or limiting research activities. Results: We found significant variation in data access policies across federal agencies and across state agencies, including variation for multiple datasets available from the same agency. We also observed numerous indirect hurdles to use of data, including complex data use application procedures, high user fees, and prolonged wait times for data delivery. Conclusions: Policy makers and data owners should consider making changes to data access policies to maximize the utility and availability of these valuable resources.en_US
dc.description.sponsorshipThis study was funded by the National Pharmaceutical Council.en_US
dc.description.urihttp://repository.edm-forum.org/egems/vol4/iss2/8en_US
dc.language.isoen_USen_US
dc.publisherEDM Forumen_US
dc.subjectdata access policiesen_US
dc.subjectpublic datasetsen_US
dc.subjectall-payer claims datasetsen_US
dc.subjectprivacyen_US
dc.subject.lcshResearchen_US
dc.subject.meshDatasets as Topicen_US
dc.titleData, Data Everywhere, But Access Remains a Big Issue for Researchers: A Review of Access Policies for Publicly-Funded Patient-level Health Care Data in the United Statesen_US
dc.typeArticleen_US
dc.identifier.doi10.13063/2327-9214.1204
dc.description.urinameFull Texten_US
refterms.dateFOA2019-02-20T19:58:51Z


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