Data Safe Havens in health research and healthcare

Bioinformatics

Volumn 31, Issue 20, 2015, Pages 3241-3248

  Burton, Paul R ^a,b   Murtagh, Madeleine J ^a   Boyd, Andy ^a   Williams, James B ^c   Dove, Edward S ^d   Wallace, Susan E ^b,e   Tassd, Anne Marie ^b   Little, Julian ^f   Chisholm, Rex L ^g   Gaye, Amadou ^a   Hveem, Kristian ^h   Brookes, Anthony J ^e   Goodwin, Pat ⁱ   Fistein, Jon ^j   Bobrow, Martin ^k   Knoppers, Bartha M ^b,l  

^a UNIVERSITY OF BRISTOL   (United Kingdom)

^b Public Population Project in Genomics and Society (P3G)   (Canada)

^c UNIVERSITY OF TORONTO   (Canada)

^d UNIVERSITY OF EDINBURGH   (United Kingdom)

^e UNIVERSITY OF LEICESTER   (United Kingdom)

^f UNIVERSITY OF OTTAWA   (Canada)

^g NORTHWESTERN UNIVERSITY   (United States)

^h NORWEGIAN UNIVERSITY OF SCIENCE AND TECHNOLOGY   (Norway)

ⁱ C3 Collaborating for Health ^*  (United Kingdom)

^j UNIVERSITY OF LEEDS   (United Kingdom)

^k UNIVERSITY OF CAMBRIDGE   (United Kingdom)

^l MCGILL UNIVERSITY   (Canada)

more..

Author keywords

[No Author keywords available]

Indexed keywords

ACCESS TO INFORMATION; CONFIDENTIALITY; HEALTH CARE DELIVERY; HUMAN; MEDICAL RESEARCH; RESEARCH;

ACCESS TO INFORMATION; BIOMEDICAL RESEARCH; CONFIDENTIALITY; DELIVERY OF HEALTH CARE; HUMANS; RESEARCH;

EID: 84940667091     PISSN: 13674803     EISSN: 14602059     Source Type: Journal    
DOI: 10.1093/bioinformatics/btv279     Document Type: Article

References (40)

1. Academy of Medical Sciences. (2013) Realising the potential of stratified medicine. Academy of Medical Sciences, London.
2. Academy of Medical Sciences. (2014) Data in Safe Havens. Academy of Medical Sciences, London.
3. Adams, S. (2013) GPs boycott big brother data plan. Mail on Sunday.
4. Administrative Data Taskforce. (2012) The UK Administrative Data Research Network: Improving Access for Research and Policy.
5. Anderson, R. (1996) Security in Clinical Information Systems.
6. Beauchamp, T., Childress, J. (2001) Principles of biomedical ethics. Oxford University Press, New York.
7. Calabresi, G., Bobbitt, P. (1978) Tragic Choices. Norton, New York.
8. Caldicott, F. (2013) Information: To share or not to share The Information Governance Review Department of Health, Crown copyright.
9. Care Record Development Board. (2007) Report of the Care Record Development Board Working Group on the Secondary Uses of Patient Information.
10. Chi, K.R. (2013) Data Drive. In: LABX Media Group, Midland, ON: The Scientist Magazine.
11. Collins, R., Biobank Steering Committee UK. (2007) UK Biobank: Protocol for a Large-Scale Prospective Epidemiological Resource. UK Biobank Coordinating Centre, Manchester.
12. Davies, J. et al. (2002) Towards the Semantic Web: Ontology-Driven Knowledge Management. John Wiley&Sons, Inc. Chichester, West Sussex.
13. Di Iorio, C.T., et al. (2013) Cross-border flow of health information: is 'privacy by design' enough Privacy performance assessment in EUBIROD. Eur. J. Public Health, 23, 247-253.
14. Dilger, A. et al. (2013) System and method for end-to-end data integrity in a network file system. Patents, U.S., ed. United States: Oracle International Coorporation, p. 20.
15. Directorate of Information Services MEL(1992)42. (1992) Guidance for the Handling of Confidential Personal Health Information in the Contracting Environment.
16. Doll, R., Peto, R. (2001) Rights involve responsibilities for patients. BMJ (Clinical Research Ed) 322, 730.
17. Dwork, C. (2006) Differential Privacy. In: Bugliesi, M., et al. (eds) 33rd International Colloquium: Automata, Languages and Programming 2006. Part 2 pp. 1-12. Springer, Heidelberg.
18. Erlich, Y., Narayanan, A. (2014) Routes for breaching and protecting genetic privacy. Nat. Rev. Genet., 15, 409-421.
19. Gaye, A. et al. (2014) DataSHIELD: taking the analysis to the data, not the data to the analysis. Int. J. Epidemiol., 43, 1929-1944.
20. Geels, F.W. (2005) Technological Transitions and System Innovations: a Coevolutionary and Socio-technical Analysis. Edward Elgar Publishing, Cheltenham, Gloucestershire.
21. Global Alliance for Genomics and Health. (2014) Framework for Responsible Sharing of Genomic and Health-Related Data. McGill University, Montreal.
22. Golle, P. (2006) Revisiting the uniqueness of simple demographics in the US population. In: Proceedings of the 5th ACM Workshop on Privacy in Electronic Society. ACM, p. 77-80.
23. Hansson, M.G. (2010) Need for a wider view of autonomy in epidemiological research. BMJ (Clinical Research Ed), 340, c2335.
24. Karr, A. et al. (2007) Secure, privacy-preserving analysis of distributed databases. Technometrics, 49, 335-345.
25. Karr, A., Reiter, J. (2014) Using statistics to protect privacy. In: Lane, J., et al. (eds.) Privacy, Big Data, and the Public Good Frameworks for Engagement. Cambridge University Press, Cambridge.
26. Kelsey, T. (2013) Transparency in the NHS not only saves lives, it is a basic human right. The Guardian 12th March 2013.
27. Lecouturier, J. et al. (2008) Clinical research without consent in adults in the emergency setting: a review of patient and public views. BMC Med. Ethics, 9, 9.
28. Lohr, S. (2012) The age of big data. New York Times. p. 11.
29. Murtagh, M.J., Hepworth, J. (2003) Feminist ethics and menopause: autonomy and decision-making in primary medical care. Soc. Sci. Med., 56, 1643-1652.
30. NHS Connecting for Health. (2009) Pseudonymisation Implementation Project (PIP). Reference Paper 2. Guidance on Business Processes and New Safe Havens. London.
31. NHS Research Capability Programme. (2008) Case for 'Honest Broker' and 'Safe Haven' Services to Support Research.
32. OECD Expert Group for International Collaboration on Microdata Access. (2014) Final Report.
33. Owen, R. et al. (2013) Responsible innovation: managing the responsible emergence of science and innovation in society. John Wiley & Sons, Chichester, West Sussex.
34. Power, C., Elliott, J. (2006) Cohort profile: 1958 British birth cohort (National Child Development Study). Int. J. Epidemiol., 35, 34-41.
35. Shaw, J. (2014) Why "Big Data" is a big deal. Harvard Magazine, March 2014
36. Sweeney, L. (2002) k-anonymity: A model for protecting privacy. Int. J. Uncertainty Fuzziness Knowl. Syst., 10, 557-570.
37. Taylor, M. (2014) Information governance as a force for good Lessons to be learnt from care.data. ScriptEd, 11, 1-8.
38. Thomas, R. et al. (2008) Data Sharing Review. ISBN 978-1-84099-204-5. Ministry of Justice, London.
39. Wolfson, M. et al. (2010) DataSHIELD: resolving a conflict in contemporary bioscience-performing a pooled analysis of individual-level data without sharing the data. Int. J. Epidemiol., 39, 1372-1382.
40. Wyke, A. (2009) Fixing Healthcare: The Professionals' Perspective. Economist Intelligence Unit, Limited, London.