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      • Record: found
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      Launching PCORnet, a national patient-centered clinical research network

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          Abstract

          The Patient-Centered Outcomes Research Institute (PCORI) has launched PCORnet, a major initiative to support an effective, sustainable national research infrastructure that will advance the use of electronic health data in comparative effectiveness research (CER) and other types of research. In December 2013, PCORI's board of governors funded 11 clinical data research networks (CDRNs) and 18 patient-powered research networks (PPRNs) for a period of 18 months. CDRNs are based on the electronic health records and other electronic sources of very large populations receiving healthcare within integrated or networked delivery systems. PPRNs are built primarily by communities of motivated patients, forming partnerships with researchers. These patients intend to participate in clinical research, by generating questions, sharing data, volunteering for interventional trials, and interpreting and disseminating results. Rapidly building a new national resource to facilitate a large-scale, patient-centered CER is associated with a number of technical, regulatory, and organizational challenges, which are described here.

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          The "meaningful use" regulation for electronic health records.

          David Blumenthal, Marilyn Tavenner (2010)
          Article 0 comments Cited 435 times – based on 0 reviews     Review now
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            Design considerations, architecture, and use of the Mini-Sentinel distributed data system.

            Marsha Raebel, Paul D. Boudreau, Nicolas U Beaulieu … (2011)
            We describe the design, implementation, and use of a large, multiorganizational distributed database developed to support the Mini-Sentinel Pilot Program of the US Food and Drug Administration (FDA). As envisioned by the US FDA, this implementation will inform and facilitate the development of an active surveillance system for monitoring the safety of medical products (drugs, biologics, and devices) in the USA. A common data model was designed to address the priorities of the Mini-Sentinel Pilot and to leverage the experience and data of participating organizations and data partners. A review of existing common data models informed the process. Each participating organization designed a process to extract, transform, and load its source data, applying the common data model to create the Mini-Sentinel Distributed Database. Transformed data were characterized and evaluated using a series of programs developed centrally and executed locally by participating organizations. A secure communications portal was designed to facilitate queries of the Mini-Sentinel Distributed Database and transfer of confidential data, analytic tools were developed to facilitate rapid response to common questions, and distributed querying software was implemented to facilitate rapid querying of summary data. As of July 2011, information on 99,260,976 health plan members was included in the Mini-Sentinel Distributed Database. The database includes 316,009,067 person-years of observation time, with members contributing, on average, 27.0 months of observation time. All data partners have successfully executed distributed code and returned findings to the Mini-Sentinel Operations Center. This work demonstrates the feasibility of building a large, multiorganizational distributed data system in which organizations retain possession of their data that are used in an active surveillance system. Copyright © 2012 John Wiley & Sons, Ltd.
            Article 0 comments Cited 76 times – based on 0 reviews     Review now
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              Distributed health data networks: a practical and preferred approach to multi-institutional evaluations of comparative effectiveness, safety, and quality of care.

              James Holmes, Alistair Brown, Ross Lazarus … (2010)
              Comparative effectiveness research, medical product safety evaluation, and quality measurement will require the ability to use electronic health data held by multiple organizations. There is no consensus about whether to create regional or national combined (eg, "all payer") databases for these purposes, or distributed data networks that leave most Protected Health Information and proprietary data in the possession of the original data holders. Demonstrate functions of a distributed research network that supports research needs and also address data holders concerns about participation. Key design functions included strong local control of data uses and a centralized web-based querying interface. We implemented a pilot distributed research network and evaluated the design considerations, utility for research, and the acceptability to data holders of methods for menu-driven querying. We developed and tested a central, web-based interface with supporting network software. Specific functions assessed include query formation and distribution, query execution and review, and aggregation of results. This pilot successfully evaluated temporal trends in medication use and diagnoses at 5 separate sites, demonstrating some of the possibilities of using a distributed research network. The pilot demonstrated the potential utility of the design, which addressed the major concerns of both users and data holders. No serious obstacles were identified that would prevent development of a fully functional, scalable network. Distributed networks are capable of addressing nearly all anticipated uses of routinely collected electronic healthcare data. Distributed networks would obviate the need for centralized databases, thus avoiding numerous obstacles.
              Article 0 comments Cited 75 times – based on 0 reviews     Review now
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                Author and article information

                Journal
                Journal ID (nlm-ta): J Am Med Inform Assoc
                Journal ID (iso-abbrev): J Am Med Inform Assoc
                Journal ID (hwp): amiajnl
                Journal ID (publisher-id): jamia
                Title: Journal of the American Medical Informatics Association : JAMIA
                Publisher: BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                ISSN (Print): 1067-5027
                ISSN (Electronic): 1527-974X
                Publication date (Print): July 2014
                Publication date (Electronic): 12 May 2014
                Publication date PMC-release: 12 May 2014
                Volume: 21
                Issue: 4
                Pages: 578-582
                Affiliations
                [1 ]Patient-Centered Outcomes Research Institute , Washington, DC, USA
                [2 ]Duke Clinical Research Institute , Durham, North Carolina, USA
                [3 ]Department of Medicine, Duke University School of Medicine , Durham, North Carolina, USA
                [4 ]Division of Cardiology, Department of Medicine, Duke University School of Medicine , Durham, North Carolina, USA
                [5 ]Duke Translational Medicine Institute, Duke University , Durham, North Carolina, USA
                [6 ]Department of Population Medicine, Harvard Pilgrim Health Care Institute , Boston, Massachusetts, USA
                [7 ]Harvard Medical School , Boston, Massachusetts, USA
                Author notes
                [Correspondence to ] Dr Rachael L Fleurence, CER Methods and Infrastructure Program, Patient Centered Outcomes Research Institute (PCORI), 1828L Street, NW, 9th Floor, Washington, DC 20036, USA; rfleurence@ 123456pcori.org , http://www.pcori.org
                Article
                Publisher ID: amiajnl-2014-002747
                DOI: 10.1136/amiajnl-2014-002747
                PMC ID: 4078292
                PubMed ID: 24821743
                SO-VID: 35a4b47b-0fe5-4df9-b96a-3f992c567a26
                Copyright © Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions
                License:

                This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 3.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/3.0/

                History
                Date received : 24 February 2014
                Date revision received : 31 March 2014
                Date accepted : 8 April 2014
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                Categories
                Subject: 1506
                Subject: Focus on Building a Network for Patient-Centered Outcomes Research
                Series title: Brief communication
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                ScienceOpen disciplines: Bioinformatics & Computational biology
                Keywords: comparative effectiveness research,distributed databases,patient-centered outcomes research institute,clinical data research networks,patient-powered research networks
                Data availability:
                ScienceOpen disciplines: Bioinformatics & Computational biology
                Keywords: comparative effectiveness research, distributed databases, patient-centered outcomes research institute, clinical data research networks, patient-powered research networks

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