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      A system to build distributed multivariate models and manage disparate data sharing policies: implementation in the scalable national network for effectiveness research

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          Abstract

          Background Centralized and federated models for sharing data in research networks currently exist. To build multivariate data analysis for centralized networks, transfer of patient-level data to a central computation resource is necessary. The authors implemented distributed multivariate models for federated networks in which patient-level data is kept at each site and data exchange policies are managed in a study-centric manner.

          Objective The objective was to implement infrastructure that supports the functionality of some existing research networks (e.g., cohort discovery, workflow management, and estimation of multivariate analytic models on centralized data) while adding additional important new features, such as algorithms for distributed iterative multivariate models, a graphical interface for multivariate model specification, synchronous and asynchronous response to network queries, investigator-initiated studies, and study-based control of staff, protocols, and data sharing policies.

          Materials and Methods Based on the requirements gathered from statisticians, administrators, and investigators from multiple institutions, the authors developed infrastructure and tools to support multisite comparative effectiveness studies using web services for multivariate statistical estimation in the SCANNER federated network.

          Results The authors implemented massively parallel (map-reduce) computation methods and a new policy management system to enable each study initiated by network participants to define the ways in which data may be processed, managed, queried, and shared. The authors illustrated the use of these systems among institutions with highly different policies and operating under different state laws.

          Discussion and Conclusion Federated research networks need not limit distributed query functionality to count queries, cohort discovery, or independently estimated analytic models. Multivariate analyses can be efficiently and securely conducted without patient-level data transport, allowing institutions with strict local data storage requirements to participate in sophisticated analyses based on federated research networks.

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          Most cited references17

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          Serving the enterprise and beyond with informatics for integrating biology and the bedside (i2b2).

          Informatics for Integrating Biology and the Bedside (i2b2) is one of seven projects sponsored by the NIH Roadmap National Centers for Biomedical Computing (http://www.ncbcs.org). Its mission is to provide clinical investigators with the tools necessary to integrate medical record and clinical research data in the genomics age, a software suite to construct and integrate the modern clinical research chart. i2b2 software may be used by an enterprise's research community to find sets of interesting patients from electronic patient medical record data, while preserving patient privacy through a query tool interface. Project-specific mini-databases ("data marts") can be created from these sets to make highly detailed data available on these specific patients to the investigators on the i2b2 platform, as reviewed and restricted by the Institutional Review Board. The current version of this software has been released into the public domain and is available at the URL: http://www.i2b2.org/software.
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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.

            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.
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              PEDSnet: how a prototype pediatric learning health system is being expanded into a national network.

              Except for a few conditions, pediatric disorders are rare diseases. Because of this, no single institution has enough patients to generate adequate sample sizes to produce generalizable knowledge. Aggregating electronic clinical data from millions of children across many pediatric institutions holds the promise of producing sufficiently large data sets to accelerate knowledge discovery. However, without deliberately embedding these data in a pediatric learning health system (defined as a health care organization that is purposefully designed to produce research in routine care settings and implement evidence at the point of care), efforts to act on this new knowledge, reducing the distress and suffering that children experience when sick, will be ineffective. In this article we discuss a prototype pediatric learning health system, ImproveCareNow, for children with inflammatory bowel disease. This prototype is being scaled up to create PEDSnet, a national network that will support the efficient conduct of clinical trials, observational research, and quality improvement across diseases, specialties, and institutions.
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                Author and article information

                Journal
                J Am Med Inform Assoc
                J Am Med Inform Assoc
                jamia
                jaminfo
                Journal of the American Medical Informatics Association : JAMIA
                Oxford University Press
                1067-5027
                1527-974X
                November 2015
                03 July 2015
                : 22
                : 6
                : 1187-1195
                Affiliations
                1Department of Preventive Medicine, University of Southern California, Los Angeles, CA, USA
                2Department of Biomedical Informatics, University of California San Diego, La Jolla, CA 92093
                3Geriatrics Research, Education, and Clinical Care Service
                4Department of Biomedical Informatics, Division of General Internal Medicine, Department of Biostatistics
                5Information Sciences Institute, University of Southern California, Marina Del Rey, CA
                6Department of Pathology and Laboratory Medicine and Department of Internal Medicine, University of California Davis, Sacramento, CA
                7Skaggs School of Pharmacy and Pharmaceutical Sciences, University of California San Diego
                8Lahey Hospital and Medical Center, Burlington, MA, USA
                Author notes
                Correspondence to Daniella Meeker, Ph.D., Department of Preventive Medicine, University of Southern California, 1450 Biggy Street, Building #288, Los Angeles, CA, 90033, USA; dmeeker@ 123456usc.edu
                Article
                ocv017
                10.1093/jamia/ocv017
                4639714
                26142423
                ba0f60cf-ef97-4961-a75f-60b20db81eef
                © The Author 2015. Published by Oxford University Press on behalf of the American Medical Informatics Association.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License ( http://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com

                History
                : 2 May 2014
                : 6 February 2015
                : 18 February 2015
                Page count
                Pages: 9
                Categories
                Research and Applications

                Bioinformatics & Computational biology
                distributed analytics,federated research network,privacy-preserving network infrastructure,comparative effectiveness research

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