Prof. Paul Burton, Prof. Madeleine Murtagh, Dr Joel Minion, Dr Olly Butters, Dr Becca Wilson, Dr Andrew Turner
D2K leads in the development of DataSHIELD - a free open-source piece of software that enables researchers to remotely analyse multiple sensitive datasets without disclosing individual level data itself. D2K holds research interests across scientific software development, statistical methodologies and ethical, legal and social issues surrounding health data linkage. Further information can be found on the project website (www.datashield.ac.uk).
Biostatistics and informatics: proof of principle and formal implementation
Gaye A, Marcon Y, Isaeva J, LaFlamme P, Turner A, Jones EM, Minion J, Boyd AW, Newby CJ, Nuotio M-L, Wilson R, Butters O, Murtagh BP, Doiron D, Giepmans L, Wallace SE, Budin-Ljøsne I, Schmidt CO, Boffetta P, Boniol M, Bota M, Carter KW, deKlerk N, Dibben C, Francis RW, Hiekkalinna T, Hveem K, Kvaløy K, Millar S, Perry IJ, Peters A, Phillips CM, Popham F, Raab G, Reischl E, Sheehan N, Waldenberger M, Perola M, van den Heuvel E, Macleod J, Knoppers BM, Stolk RP, Fortier I, Harris JR, Woffenbuttel BHR, Murtagh MJ, Ferretti V, Burton PR. (2014). DataSHIELD: taking the analysis to the data, not the data to the analysis. International Journal of Epidemiology.
Jones EM, Sheehan NA, Gaye A, Laflamme P, Burton PR. (2013). Combined analysis of correlated data when data cannot be pooled. STAT 2:72-85.
Jones, EM, Sheehan, N, Masca, N, Wallace, S, Murtagh, MJ, Burton, PR.(2012). DataSHIELD - shared individual-level analysis without sharing data: a biostatistical perspective. Norwegian Journal of Epidemiology. 21 (2): 231-239.
Wolfson M, Wallace SE, Masca N, Rowe G, Sheehan NA, Ferretti V, Laflamme P, Tobin MD, Macleod J, Little J, Fortier I, Knoppers BM, Burton PR. (2010). DataSHIELD: resolving a conflict in contemporary bioscience--performing a pooled analysis of individual-level data without sharing the data. Int J Epidemiol, Oct;39(5): 1372-82.
Application to real data
van Vliet-Ostaptchouk JV, Nuotio ML, Slagter SN, Doiron D, Fischer K, Foco L, Gaye A, Gogele M, Heier M, Hiekkalinna T, Joensuu A, Newby C, Pang C, Partinen E, Reischl E, Schwienbacher C, Tammesoo ML, Swertz MA, Burton PR, Ferretti V, Fortier I, Giepmans L, Harris JR, Hillege HL, Holmen J, Jula A, Kootstra-Ros JE, Kvaloy K, Holmen TL, Mannisto S, Metspalu A, Midthjell K, Murtagh MJ, Peters A, Pramstaller PP, Saaristo T, Salomaa V, Stolk RP, Uusitupa M, van der Harst P, van der Klauw MM, Waldenberger M, Perola M, Wolffenbuttel BH. (2014). The prevalence of metabolic syndrome and metabolically healthy obesity in Europe: a collaborative analysis of ten large cohort studies. BMC endocrine disorders, 14:9.
Doiron D, Burton PR, Marcon Y, Gaye A, Wolffenbuttel BHR, Perola M, Stolk RP, Foco L, Minelli C, Waldenberger M, Holle R, Kvaløy K,Hillege HL, Tassé A-M, Ferretti V, Fortier I. (2013). Data harmonization and federated analysis of 3 population-based studies: the BioSHaRE project. Emerging Themes in Epidemiology, 10:12.
Social and ethico-legal issues
Murtagh, MJ, Demir, I, Jenkings,N, Wallace, S, Murtagh, B, Boniol,, M, Bota, M, LaFlamme, P, Boffetta, P, Ferretti, V, Burton, PR. (2012). Securing the data economy: Translating privacy and enacting security in the development of DataSHIELD. Public Health Genomics. 15: 243-253.
Wallace SE, Gaye A, Shoush O, Burton PR. (2014). Protecting Personal Data in Epidemiological Research: DataSHIELD and UK Law. Public Health Genomics, 17: 149-57.
DataSHIELD in a broader strategic context
Murtagh MJ, Demir I, Harris JR, Burton PR. (2011). Realizing the promise of population biobanks: a new model for translation. Human genetics, 130(3): 333-45.
Murtagh, MJ, Thorrison, G, Kaye, J, Fortier, I, Harris, JR, Cox, D, Deschênes, M, Laflamme, P, Ferretti, V, Sheehan, N, Hudson, T. Cambon Thomsen, A, Stolk, R, Knoppers, BM, Brookes, AJ. Burton, PR. (2012). Navigating the perfect [data] storm. Norwegian Journal of Epidemiology. 21 (2): 203-209
Harris JR, Burton PR, Knoppers BM, Lindpaintner K, Bledsoe M, Brookes AJ, Budin-Ljosne I, Chisholm R, Cox D, Deschenes M, Fortier I, Hainaut P, Hewitt R, Kaye J, Litton JE, Metspalu A, Ollier B, Palmer LJ, Palotie A, Pasterk M, Perola M, Riegman PH, van Ommen GJ, Yuille M, Zatloukal K. (2012). Toward a roadmap in global biobanking for health. European Journal of Human Genetics, 20: 1105-1111
Demir I and Murtagh MJ (2013) Data sharing across biobanks: epistemic values, data mutability and data incommensurability. New Genetics and Society, 32:350-365.
