Literature DB >> 23932285

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

Daniel John Exeter1, Sarah Rodgers2, Clive Eric Sabel3.   

Abstract

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.
Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.

Entities:  

Keywords:  Access; Confidentiality; Data collection; Medical record linkage; Privacy; Web 2.0

Mesh:

Year:  2013        PMID: 23932285     DOI: 10.1016/j.healthpol.2013.07.012

Source DB:  PubMed          Journal:  Health Policy        ISSN: 0168-8510            Impact factor:   2.980


  5 in total

1.  Bigdata Oriented Multimedia Mobile Health Applications.

Authors:  Zhihan Lv; Javier Chirivella; Pablo Gagliardo
Journal:  J Med Syst       Date:  2016-03-28       Impact factor: 4.460

2.  Are patient relationships the driver for information governance?

Authors:  Nathan C Lea; Jacqueline Nicholls
Journal:  Br J Gen Pract       Date:  2016-07       Impact factor: 5.386

3.  Sharing Public Health Research Data: Toward the Development of Ethical Data-Sharing Practice in Low- and Middle-Income Settings.

Authors:  Michael Parker; Susan Bull
Journal:  J Empir Res Hum Res Ethics       Date:  2015-07       Impact factor: 1.742

4.  Data Safe Havens and Trust: Toward a Common Understanding of Trusted Research Platforms for Governing Secure and Ethical Health Research.

Authors:  Nathan Christopher Lea; Jacqueline Nicholls; Christine Dobbs; Nayha Sethi; James Cunningham; John Ainsworth; Martin Heaven; Trevor Peacock; Anthony Peacock; Kerina Jones; Graeme Laurie; Dipak Kalra
Journal:  JMIR Med Inform       Date:  2016-06-21

5.  Data mashups: potential contribution to decision support on climate change and health.

Authors:  Lora E Fleming; Andy Haines; Brian Golding; Anthony Kessel; Anna Cichowska; Clive E Sabel; Michael H Depledge; Christophe Sarran; Nicholas J Osborne; Ceri Whitmore; Nicola Cocksedge; Daniel Bloomfield
Journal:  Int J Environ Res Public Health       Date:  2014-02-04       Impact factor: 3.390

  5 in total

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