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“Whose data is it anyway?” The implications of putting small area-level health and social data online

Listed author(s):
  • Exeter, Daniel John
  • Rodgers, Sarah
  • Sabel, Clive Eric
Registered author(s):

    Data from electronic patient management systems, routine national health databases, and social administrative systems have increased significantly over the past decade. These data are increasingly used to create maps and analyses communicating the geography of health and illness. The results of these analyses can be easily disseminated on the web often without due consideration for the identification, access, ethics, or governance, of these potentially sensitive data. Lack of consideration is currently proving a deterrent to many organisations that might otherwise provide data to central repositories for invaluable social science and medical research. We believe that exploitation of such data is needed to further our understanding of the determinants of health and inequalities. Therefore, we propose a geographical privacy-access continuum framework, which could guide data custodians in the efficient dissemination of data while retaining the confidentiality of the patients/individuals concerned. We conclude that a balance of restriction and access is needed allowing linkage of multiple datasets without disclosure, enabling researchers to gather the necessary evidence supporting policy changes or complex environmental and behavioural health interventions.

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    File URL: http://www.sciencedirect.com/science/article/pii/S0168851013002017
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    Article provided by Elsevier in its journal Health Policy.

    Volume (Year): 114 (2014)
    Issue (Month): 1 ()
    Pages: 88-96

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    Handle: RePEc:eee:hepoli:v:114:y:2014:i:1:p:88-96
    DOI: 10.1016/j.healthpol.2013.07.012
    Contact details of provider: Web page: http://www.elsevier.com/locate/healthpol

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    1. Dahlgren, Göran & Whitehead, Margaret, 1991. "Policies and strategies to promote social equity in health. Background document to WHO - Strategy paper for Europe," Arbetsrapport 2007:14, Institute for Futures Studies.
    2. Norman, Paul & Boyle, Paul & Exeter, Daniel & Feng, Zhiqiang & Popham, Frank, 2011. "Rising premature mortality in the UK’s persistently deprived areas: Only a Scottish phenomenon?," Social Science & Medicine, Elsevier, vol. 73(11), pages 1575-1584.
    3. A S Fotheringham & D W S Wong, 1991. "The Modifiable Areal Unit Problem in Multivariate Statistical Analysis," Environment and Planning A, , vol. 23(7), pages 1025-1044, July.
    4. Nikolay Nenovsky & S. Statev, 2006. "Introduction," Post-Print halshs-00260898, HAL.
    5. M. Ruth & K. Donaghy & P. Kirshen, 2006. "Introduction," Chapters,in: Regional Climate Change and Variability, chapter 1 Edward Elgar Publishing.
    6. Sabel, Clive E. & Gatrell, Anthony C. & Löytönen, Markku & Maasilta, Paula & Jokelainen, Matti, 2000. "Modelling exposure opportunities: estimating relative risk for motor neurone disease in Finland," Social Science & Medicine, Elsevier, vol. 50(7-8), pages 1121-1137, April.
    7. A S Fotheringham & D W S Wong, 1991. "The modifiable areal unit problem in multivariate statistical analysis," Environment and Planning A, Pion Ltd, London, vol. 23(7), pages 1025-1044, July.
    8. Cox, Matthew & Boyle, Paul J. & Davey, Peter & Morris, Andrew, 2007. "Does health-selective migration following diagnosis strengthen the relationship between Type 2 diabetes and deprivation?," Social Science & Medicine, Elsevier, vol. 65(1), pages 32-42, July.
    9. Exeter, Daniel J. & Boyle, Paul J. & Norman, Paul, 2011. "Deprivation (im)mobility and cause-specific premature mortality in Scotland," Social Science & Medicine, Elsevier, vol. 72(3), pages 389-397, February.
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