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      A systematic review of barriers to data sharing in public health

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          Abstract

          Background

          In the current information age, the use of data has become essential for decision making in public health at the local, national, and global level. Despite a global commitment to the use and sharing of public health data, this can be challenging in reality. No systematic framework or global operational guidelines have been created for data sharing in public health. Barriers at different levels have limited data sharing but have only been anecdotally discussed or in the context of specific case studies. Incomplete systematic evidence on the scope and variety of these barriers has limited opportunities to maximize the value and use of public health data for science and policy.

          Methods

          We conducted a systematic literature review of potential barriers to public health data sharing. Documents that described barriers to sharing of routinely collected public health data were eligible for inclusion and reviewed independently by a team of experts. We grouped identified barriers in a taxonomy for a focused international dialogue on solutions.

          Results

          Twenty potential barriers were identified and classified in six categories: technical, motivational, economic, political, legal and ethical. The first three categories are deeply rooted in well-known challenges of health information systems for which structural solutions have yet to be found; the last three have solutions that lie in an international dialogue aimed at generating consensus on policies and instruments for data sharing.

          Conclusions

          The simultaneous effect of multiple interacting barriers ranging from technical to intangible issues has greatly complicated advances in public health data sharing. A systematic framework of barriers to data sharing in public health will be essential to accelerate the use of valuable information for the global good.

          Electronic supplementary material

          The online version of this article (doi:10.1186/1471-2458-14-1144) contains supplementary material, which is available to authorized users.

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          Most cited references75

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          A scandal of invisibility: making everyone count by counting everyone.

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            Civil registration systems and vital statistics: successes and missed opportunities.

            Vital statistics generated through civil registration systems are the major source of continuous monitoring of births and deaths over time. The usefulness of vital statistics depends on their quality. In the second paper in this Series we propose a comprehensive and practical framework for assessment of the quality of vital statistics. With use of routine reports to the UN and cause-of-death data reported to WHO, we review the present situation and past trends of vital statistics in the world and note little improvement in worldwide availability of general vital statistics or cause-of-death statistics. Only a few developing countries have been able to improve their civil registration and vital statistics systems in the past 50 years. International efforts to improve comparability of vital statistics seem to be effective, and there is reasonable progress in collection and publication of data. However, worldwide efforts to improve data have been limited to sporadic and short-term measures. We conclude that countries and developmental partners have not recognised that civil registration systems are a priority.
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              Sharing research data to improve public health.

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                Author and article information

                Contributors
                wav10@pitt.edu
                prp25@pitt.edu
                claudia.emerson@srcglobal.org
                gref@pitt.edu
                Dick.Wilder@gatesfoundation.org
                kherbst@africacentre.ac.za
                David.Heymann@phe.gov.uk
                donburke@pitt.edu
                Journal
                BMC Public Health
                BMC Public Health
                BMC Public Health
                BioMed Central (London )
                1471-2458
                5 November 2014
                5 November 2014
                2014
                : 14
                : 1
                : 1144
                Affiliations
                [ ]University of Pittsburgh Graduate School of Public Health, DeSoto street 130, 703 Parran Hall, Pittsburgh, PA 15261 USA
                [ ]Sandra Rotman Centre, University Health Network & University of Toronto, Toronto, Canada
                [ ]Bill & Melinda Gates Foundation, Seattle, USA
                [ ]INDEPTH Network, Accra, Ghana
                [ ]The Africa Centre for Health and Population Studies, UKZN, Somkhele, South Africa
                [ ]Chatham House London, London, UK
                Article
                7242
                10.1186/1471-2458-14-1144
                4239377
                25377061
                4ac54b9f-6667-492b-add6-951c6f1f0260
                © van Panhuis et al.; licensee BioMed Central Ltd. 2014

                This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 11 June 2014
                : 7 October 2014
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2014

                Public health
                data sharing,public health,surveillance
                Public health
                data sharing, public health, surveillance

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