A case study of the secure anonymous information linkage (SAIL) gateway: A privacy-protecting remote access system for health-related research and evaluation

Journal of Biomedical Informatics

Volumn 50, Issue , 2014, Pages 196-204

  Jones, Kerina H ^a   Ford, David V ^a   Jones, Chris ^a   Dsilva, Rohan ^a   Thompson, Simon ^a   Brooks, Caroline J ^a   Heaven, Martin L ^a   Thayer, Daniel S ^a   McNerney, Cynthia L ^a   Lyons, Ronan A ^a  

^a SWANSEA UNIVERSITY   (United Kingdom)

Author keywords

Data linkage; E Records research; Privacy protection; Remote access system

Indexed keywords

BIOINFORMATICS; COMPUTER APPLICATIONS;

DATA LINKAGE; DATA USERS; INFORMATION LINKAGES; OPERATING MODELS; PRIVACY-PROTECTION; REMOTE ACCESS; RESEARCH AND EVALUATION; SECURE REMOTE ACCESS;

DATA HANDLING;

ACCESS TO INFORMATION; ARTICLE; COMPUTER INTERFACE; COMPUTER SECURITY; DATA ANALYSIS; DATA BASE; ELECTRONIC MEDICAL RECORD; HUMAN; INFORMATION DISSEMINATION; INFORMATION PROCESSING; MEDICAL INFORMATICS; MEDICAL INFORMATION SYSTEM; MEDICAL RESEARCH; PRIORITY JOURNAL; PRIVACY; REMOTE SENSING; SECURE ANONYMOUS INFORMATION LINKAGE; TELEHEALTH; RESEARCH;

COMPUTER SECURITY; PRIVACY; RESEARCH;

EID: 84905268983     PISSN: 15320464     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.jbi.2014.01.003     Document Type: Article

References (38)

1. Gissler M., Haukka J. Finnish health and social welfare registers in epidemiological research. Nor Epidemiol 2004, 14(1):113-120.
2. Kelman C.W., Bass A.J., Holman C.D.J. Research use of linked health data - a best practice protocol. ANZ J Public Health 2002, 26:251-255.
3. Roos L.L., Brownwell M., Lix L., Roos N.P., Walld R., Macwilliam L. From health research to social research: privacy, methods, approaches. Soc Sci Med 2008, 66:117-129.
4. Hertzman C.P., Meagher N., McGrail K.N. Privacy by Design at Population Data BC: a case study describing the technical, administrative, and physical controls for privacy-sensitive secondary use of personal information for research in the public interest. J Am Med Inform Assoc 2013, 20:1 25-28. [Published Online First: 30.08.12]. 10.1136/amiajnl-2012-001011.
5. Scottish Government. A blueprint for health records research in Scotland. July 2012. [accessed 18.05.13]. http://www.scot-ship.ac.uk/sites/default/files/Reports/SHIP_BLUEPRINT_DOCUMENT_final_100712.pdf.
6. Gill L.E. OX-LINK: the Oxford medical record linkage system. Record linkage techniques 1997, 19. University of Oxford, Oxford.
7. Ford D.V., Jones K.H., Verplancke J.-P., Lyons R.A., John G., Brown G., et al. The SAIL Databank: building a national architecture for e-health research and evaluation. BMC Health Serv Res 2009, 9:157.
8. Boyd J.H., Ferrante A.M., O'Keefe C.M., Bass A.J., Randall S.M., Semmens J.B. Data linkage infrastructure for cross-jurisdictional health-related research in Australia. BMC Health Serv Res 2012, 12:480. 10.1186/1472-6963-12-480.
9. Medical Research Council (b); 2012. [accessed 18.05.13]. http://www.mrc.ac.uk/Newspublications/News/MRC008799.
10. Centre for the Improvement of Population Health through Ehealth Research. [accessed 18.05.13]. http://www.swan.ac.uk/medicine/cipher/.
11. Lyons R.A., Jones K.H., John G., Brooks C.J., Verplancke J.-P., Ford D.V., et al. The SAIL databank: linking multiple health and social care datasets. BMC Med Inform Decis Mak 2009, 9:3.
12. Gabbe B.J., Lyons R.A., Lecky F.E., Bouamra O., Woodford M., Coats T.J., et al. Comparison of mortality following hospitalisation for isolated head injury in England and Wales, and Victoria, Australia. PLoS One 2011, 6:e20545. [Published 31.05.11].
13. Cavoukian A. Privacy by design...take the challenge. Information and Privacy Commissioner of Ontario; 2009. [accessed 18.05.13]. http://www.ipc.on.ca/english/Resources/Discussion-Papers/Discussion-Papers-Summary/?id=856.
14. NHS Wales Informatics Service. [accessed 18.05.13]. http://www.wales.nhs.uk/sitesplus/956/home.
15. Schneier B. Description of a new variable-length key, 64-bit block Cipher (Blowfish). Fast Software Encryption, Cambridge security workshop proceedings (December 1993) 1994, Springer-Verlag.
16. Rodgers S.E., Lyons R.A., Dsilva R., Jones K.H., Brooks C.J., Ford D.V., et al. Residential Anonymous Linking Fields (RALFs): a novel information infrastructure to study the interaction between the environment and individuals' health. J Public Health 2009, 1-7.
17. Rodgers S.E., Demmler J.C., D'Silva R., Lyons R.A. Protecting health data privacy while using residence-based environment and demographic data. Health Place 2011, 10.1016/j.healthplace.2011.09.006.
18. Jones K.H., McNerney C.L., Ford D.V. Involving consumers in the work of a data linkage research unit. Int J Consum Stud 2014, 38(1):45-51. 10.1111/ijcs.12062.
19. YubiKey Standard. [accessed 23.07.13]. http://www.yubico.com/products/yubikey-hardware/yubikey/.
20. Screwturn wiki. [accessed 18.05.13]. http://www.screwturn.eu/.
21. Pidgin: universal chat client. [accessed 18.05.13]. http://www.pidgin.im/.
22. Osqa: the open source Q&A system. [accessed 18.05.13]. http://www.osqa.net/.
23. Office of National Statistics. [accessed 18.05.13]. http://www.ons.gov.uk/ons/guide-method/best-practice/disclosure-control-policy-for-tables/index.html.
24. Snooks H.A., Anthony R., Chatters R., Cheung W.Y., Dale J., Donohoe R., et al. Support and assessment for fall emergency referrals (SAFER 2) research protocol: cluster randomised trial of the clinical and cost effectiveness of new protocols for emergency ambulance paramedics to assess and refer to appropriate community based care. BMJ Open 2012, 2:e002169. 10.1136/bmjopen-2012-002169.
25. Ford D.V., Jones K.H., Middleton R.M., Lockhart-Jones H., Maramba I.D.C., Noble G.J., et al. The feasibility of collecting information from people with Multiple Sclerosis for the UK MS register via a web portal: characterising a cohort of people with MS. BMC Med Inform Decis Mak 2012, 12(1):73. [18.07.12].
26. Jones K.H., Ford D.V., Jones P.A., John A., Middleton R.M., Lockhart-Jones H., et al. A large-scale study of anxiety and depression in people with multiple sclerosis: a survey via the web portal of the UK MS register. PLoS One 2012, 7(7):e41910. 10.1371/journal.pone.0041910.
27. Jones K.H., Ford D.V., Jones P.A., John A., Middleton R.M., Lockhart-Jones H., et al. The physical and psychological impact of Multiple Sclerosis using the MSIS-29 via the UK MS register. PLoS One 2013, [Published 31.01.13].
28. Jones K.H., Ford D.V., Jones P.A., John A., Middleton R.M., Lockhart-Jones H., et al. How people with Multiple Sclerosis rate their quality of life: an EQ-5D survey via the UK MS register. PLoS One 2013, 8(6):e65640. 10.1371/journal.pone.0065640.
29. Atkinson M.D., Brophy S., Siebert S., Gravenor M.B., Phillips C.J., Ford D.V., et al. Protocol for a population-based Ankylosing Spondylitis (PAS) cohort in Wales. BMC Musculoskelet Disord 2010, 11:197. 10.1186/1471-2474-11-197.
30. Rodgers S.E., Heaven M., Lacey A., Macey S., Poortinga W., Dunstan F.D., et al. Cohort profile: the housing regeneration and health study. Int J Epidemiol 2012,
31. Brophy S., Jones K.H., Rahman M.A., Zhou S.-M., John A., Atkinson M.D., et al. Incidence of Campylobacter and Salmonella infections following first prescription for PPI - a cohort study using routine data. Am J Gastroenterol 2013, 108(7):1094-1100. 10.1038/ajg.2013.30.
32. Brooks CJ, Stephens JW, Price DE, Ford DV, Lyons RA, Prior SL, et al. Use of a patient linked data warehouse to facilitate diabetes trial recruitment from primary care. Prim Care Diab, 2009. doi: http://dx.doi.org/10.1016/j.pcd.2009.06.004. doi:10.1016/j.pcd.2009.06.004.
33. Mcgregor J., Brooks C., Chalasani P., Chukwuma J., Hutchings H., Lyons R.A., et al. The Health Informatics Trial Enhancement Project (HITE): using routinely collected primary care data to identify potential participants for a depression trial. Trials 2010, 11:39. http://www.trialsjournal.com/content/11/1/39. 10.1186/1745-6215-11-39.
34. UK Data Service. [accessed 30.11.13]. http://www.discover.ukdataservice.ac.uk/Catalogue/?sn=7196%26type=Data%20catalogue.
35. SAIL databank. [accessed 23.07.13]. http://www.saildatabank.com/.
36. El Emam K, Cavoukian A. A positive-sum paradigm in action in the health sector. Information and Privacy Commissioner of Ontario; 2010. [accessed 18.05.13]. http://www.ipc.on.ca/images/Resources/positive-sum-khalid.pdf.
37. Population data BC. [accessed 18.05.13]. http://www.popdata.bc.ca/aboutus.
38. Information services division. [accessed 02.12.13]. http://www.isdscotland.org/Products-and-Services/eDRIS/.