title: Four health data networks illustrate the potential for a shared national multipurpose big-data network.
abstract: Information in electronic health data that are drawn from large populations of patients is transforming health care, public health practice, and clinical research. This article describes our experience in developing data networks that repurpose electronic health records and administrative data. The four programs we feature are the Food and Drug Administration's Mini-Sentinel program (which focuses on medical product safety), the National Patient-Centered Clinical Research Network (PCORnet, comparative effectiveness research), the National Institutes of Health's Health Care Systems Research Collaboratory Distributed Research Network (biomedical research), and ESPnet (public health surveillance). Challenges to these uses of electronic health data include understanding the factors driving the collection, coding, and preservation of the data; the extensive customization of different systems that collect similar data; the fragmentation of the US health care delivery system and its records; and privacy and proprietary considerations. We view these four programs as examples of the first stage in the development of a shared national big-data resource that leverages the investments of many agencies and organizations for the benefit of multiple networks and users.
authors.affiliation: Lesley H. Curtis is a professor of medicine at Duke University, in Durham, North Carolina.
authors.forename: Lesley H
authors.initials: LH
authors.lastname: Curtis
authors.affiliation: Jeffrey Brown is an assistant professor of population medicine at Harvard Medical School and the Harvard Pilgrim Health Care Institute, both in Boston, Massachusetts.
authors.forename: Jeffrey
authors.initials: J
authors.lastname: Brown
authors.affiliation: Richard Platt (richard_platt@harvard.edu) is a professor and chair of population medicine at Harvard Medical School and the Harvard Pilgrim Health Care Institute.
authors.forename: Richard
authors.initials: R
authors.lastname: Platt
mesh_terms: D035843:Biomedical Research; D057186:Comparative Effectiveness Research; D003195:Computer Communication Networks / Q000458:organization & administration*; D003219:Confidentiality; D057225:Data Mining; D066264:Datasets as Topic; D057286:Electronic Health Records / Q000458:organization & administration*; D006801:Humans; D009316:National Institutes of Health (U.S.) / Q000458:organization & administration; D018802:Patient-Centered Care / Q000458:organization & administration; D014481:United States; D014486:United States Food and Drug Administration / Q000458:organization & administration
keywords: Information Technology; Public Health; Research And Technology