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      Collaborating on Data, Science, and Infrastructure: The 20-Year Journey of the Cancer Research Network

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          Abstract

          The Cancer Research Network (CRN) is a consortium of 12 research groups, each affiliated with a nonprofit integrated health care delivery system, that was first funded in 1998. The overall goal of the CRN is to support and facilitate collaborative cancer research within its component delivery systems. This paper describes the CRN’s 20-year experience and evolution. The network combined its members’ scientific capabilities and data resources to create an infrastructure that has ultimately supported over 275 projects. Insights about the strengths and limitations of electronic health data for research, approaches to optimizing multidisciplinary collaboration, and the role of a health services research infrastructure to complement traditional clinical trials and large observational datasets are described, along with recommendations for other research consortia.

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          The use of computed tomography in pediatrics and the associated radiation exposure and estimated cancer risk.

          Increased use of computed tomography (CT) in pediatrics raises concerns about cancer risk from exposure to ionizing radiation. To quantify trends in the use of CT in pediatrics and the associated radiation exposure and cancer risk. Retrospective observational study. Seven US health care systems. The use of CT was evaluated for children younger than 15 years of age from 1996 to 2010, including 4 857 736 child-years of observation. Radiation doses were calculated for 744 CT scans performed between 2001 and 2011. Rates of CT use, organ and effective doses, and projected lifetime attributable risks of cancer. RESULTS The use of CT doubled for children younger than 5 years of age and tripled for children 5 to 14 years of age between 1996 and 2005, remained stable between 2006 and 2007, and then began to decline. Effective doses varied from 0.03 to 69.2 mSv per scan. An effective dose of 20 mSv or higher was delivered by 14% to 25% of abdomen/pelvis scans, 6% to 14% of spine scans, and 3% to 8% of chest scans. Projected lifetime attributable risks of solid cancer were higher for younger patients and girls than for older patients and boys, and they were also higher for patients who underwent CT scans of the abdomen/pelvis or spine than for patients who underwent other types of CT scans. For girls, a radiation-induced solid cancer is projected to result from every 300 to 390 abdomen/pelvis scans, 330 to 480 chest scans, and 270 to 800 spine scans, depending on age. The risk of leukemia was highest from head scans for children younger than 5 years of age at a rate of 1.9 cases per 10 000 CT scans. Nationally, 4 million pediatric CT scans of the head, abdomen/pelvis, chest, or spine performed each year are projected to cause 4870 future cancers. Reducing the highest 25% of doses to the median might prevent 43% of these cancers. The increased use of CT in pediatrics, combined with the wide variability in radiation doses, has resulted in many children receiving a high-dose examination. Dose-reduction strategies targeted to the highest quartile of doses could dramatically reduce the number of radiation-induced cancers.
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            Launching PCORnet, a national patient-centered clinical research network

            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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              Implementing the learning health system: from concept to action.

              Clinicians and health systems are facing widespread challenges, including changes in care delivery, escalating health care costs, and the need to keep up with rapid scientific discovery. Reorganizing U.S. health care and changing its practices to render better, more affordable care requires transformation in how health systems generate and apply knowledge. The "rapid-learning health system"-posited as a conceptual strategy to spur such transformation-leverages recent developments in health information technology and a growing health data infrastructure to access and apply evidence in real time, while simultaneously drawing knowledge from real-world care-delivery processes to promote innovation and health system change on the basis of rigorous research. This article describes an evolving learning health system at Group Health Cooperative, the 6 phases characterizing its approach, and examples of organization-wide applications. This practical model promotes bidirectional discovery and an open mind at the system level, resulting in willingness to make changes on the basis of evidence that is both scientifically sound and practice-based. Rapid learning must be valued as a health system property to realize its full potential for knowledge generation and application.
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                Author and article information

                Contributors
                Journal
                EGEMS (Wash DC)
                EGEMS (Wash DC)
                2327-9214
                eGEMs
                Ubiquity Press
                2327-9214
                29 March 2019
                2019
                : 7
                : 1
                : 7
                Affiliations
                [1 ]Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, US
                [2 ]Marshfield Clinic Research Institute, Marshfield, WI, US
                [3 ]Kaiser Permanente Washington Health Research Institute, Seattle, WA, US
                [4 ]University of California Davis School of Medicine, Davis, CA, US
                [5 ]Division of Research, Kaiser Permanente Northern California, Oakland, CA, US
                [6 ]Department of Population Medicine, Harvard Medical School, Boston, MA, US
                [7 ]Harvard Pilgrim Health Care Institute, Boston, MA, US
                [8 ]Center for Health Research, Kaiser Permanente Northwest, Portland, OR, US
                [9 ]Institute for Health Research, Kaiser Permanente Colorado, Aurora, CO, US
                [10 ]Health Care Systems Research Network, Seattle, WA, US
                [11 ]Retired
                Author notes
                Corresponding author: V. Paul Doria-Rose ( doriarop@ 123456mail.nih.gov )
                Article
                10.5334/egems.273
                6450242
                30972356
                963f1e73-c028-49c7-bde1-c9d6d9642cd0
                Copyright: © 2019 The Author(s)

                This is an open-access article distributed under the terms of the Creative Commons Attribution 4.0 International License (CC-BY 4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. See http://creativecommons.org/licenses/by/4.0/.

                History
                : 21 June 2018
                : 16 October 2018
                Categories
                Review

                electronic health records,delivery of health care,quality improvement,health services research,research network

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