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A Solutions-Based Approach to Building Data-Sharing Partnerships

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      Abstract

      Introduction:

      Although researchers recognize that sharing disparate data can improve population health, barriers (technical, motivational, economic, political, legal, and ethical) limit progress. In this paper, we aim to enhance the van Panhuis et al. framework of barriers to data sharing; we present a complementary solutions-based data-sharing process in order to encourage both emerging and established researchers, whether or not in academia, to engage in data-sharing partnerships.

      Brief Description of Major Components:

      We enhance the van Panhuis et al. framework in three ways. First, we identify the appropriate stakeholder(s) within an organization (e.g., criminal justice agency) with whom to engage in addressing each category of barriers. Second, we provide a representative sample of specific challenges that we have faced in our data-sharing partnerships with criminal justice agencies, local clinical systems, and public health. Third, and most importantly, we suggest solutions we have found successful for each category of barriers. We grouped our solutions into five core areas that cut across the barriers as well as stakeholder groups: Preparation, Clear Communication, Funding/Support, Non-Monetary Benefits, and Regulatory Assurances.

      Our solutions-based process model is complementary to the enhanced framework. An important feature of the process model is the cyclical, iterative process that undergirds it. Usually, interactions with new data-sharing partner organizations begin with the leadership team and progress to both the data management and legal teams; however, the process is not always linear.

      Conclusions and Next Steps:

      Data sharing is a powerful tool in population health research, but significant barriers hinder such partnerships. Nevertheless, by aspiring to community-based participatory research principles, including partnership engagement, development, and maintenance, we have overcome barriers identified in the van Panhuis et al. framework and have achieved success with various data-sharing partnerships.

      In the future, systematically studying data-sharing partnerships to clarify which elements of a solutions-based approach are essential for successful partnerships may be helpful to academic and non-academic researchers. The organizational climate is certainly a factor worth studying also because it relates both to barriers and to the potential workability of solutions.

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      Most cited references 15

      • Record: found
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      Review of community-based research: assessing partnership approaches to improve public health.

      Community-based research in public health focuses on social, structural, and physical environmental inequities through active involvement of community members, organizational representatives, and researchers in all aspects of the research process. Partners contribute their expertise to enhance understanding of a given phenomenon and to integrate the knowledge gained with action to benefit the community involved. This review provides a synthesis of key principles of community-based research, examines its place within the context of different scientific paradigms, discusses rationales for its use, and explores major challenges and facilitating factors and their implications for conducting effective community-based research aimed at improving the public's health.
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        • Record: found
        • Abstract: not found
        • Article: not found

        Shattuck Lecture. We can do better--improving the health of the American people.

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          • Record: found
          • Abstract: found
          • Article: not found

          Toward a national framework for the secondary use of health data: an American Medical Informatics Association White Paper.

          Secondary use of health data applies personal health information (PHI) for uses outside of direct health care delivery. It includes such activities as analysis, research, quality and safety measurement, public health, payment, provider certification or accreditation, marketing, and other business applications, including strictly commercial activities. Secondary use of health data can enhance health care experiences for individuals, expand knowledge about disease and appropriate treatments, strengthen understanding about effectiveness and efficiency of health care systems, support public health and security goals, and aid businesses in meeting customers' needs. Yet, complex ethical, political, technical, and social issues surround the secondary use of health data. While not new, these issues play increasingly critical and complex roles given current public and private sector activities not only expanding health data volume, but also improving access to data. Lack of coherent policies and standard "good practices" for secondary use of health data impedes efforts to strengthen the U.S. health care system. The nation requires a framework for the secondary use of health data with a robust infrastructure of policies, standards, and best practices. Such a framework can guide and facilitate widespread collection, storage, aggregation, linkage, and transmission of health data. The framework will provide appropriate protections for legitimate secondary use.
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            Author and article information

            Affiliations
            [1 ]Indiana University School of Medicine, US
            [2 ]Ann and Robert H. Lurie Children’s Hospital of Chicago, US
            [3 ]Yale University School of Medicine, US
            [4 ]Marion County Public Health Department, US
            Contributors
            Journal
            EGEMS (Wash DC)
            EGEMS (Wash DC)
            2327-9214
            eGEMs
            Ubiquity Press
            2327-9214
            22 August 2018
            2018
            : 6
            : 1
            6108450
            10.5334/egems.236
            Copyright: © 2018 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/.

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            Model/Framework

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