Healthcare data safe havens: towards a logical architecture and experiment automation

David Robertson; Fausto Giunchiglia; Stephen Pavis; Ettore Turra; Gabor Bella; Elizabeth Elliot; Andrew Morris; Malcolm Atkinson; Gordon McAllister; Areti Manataki; Petros Papapanagiotou; Mark Parsons

Healthcare data safe havens: towards a logical architecture and experiment automation

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Author(s): David Robertson¹ ; Fausto Giunchiglia² ; Stephen Pavis³ ; Ettore Turra⁴ ; Gabor Bella² ; Elizabeth Elliot⁵ ; Andrew Morris⁵ ; Malcolm Atkinson¹ ; Gordon McAllister⁶ ; Areti Manataki¹ ; Petros Papapanagiotou¹ ; Mark Parsons⁷
- Affiliations: 1: School of Informatics, University of Edinburgh , Edinburgh , UK ;
  2: Dipartimento di Ingegneria e Scienza dell'Informazione, University of Trento , Trento , Italy ;
  3: NHS National Services Scotland , Edinburgh , UK ;
  4: Azienda Provinciale per i Servizi Sanitari , Trentino , Italy ;
  5: Usher Institute of Population Health Sciences and Informatics, University of Edinburgh , Edinburgh , UK ;
  6: School of Medicine, University of Dundee , Dundee , UK ;
  7: EPCC, University of Edinburgh , Edinburgh , UK
Source: Volume 2016, Issue 11, November 2016, p. 431 – 440
DOI: 10.1049/joe.2016.0170 , Online ISSN 2051-3305

This is an open access article published by the IET under the Creative Commons Attribution License (http://creativecommons.org/licenses/by/3.0/)

Received 03/06/2016, Accepted 10/10/2016, Revised 24/09/2016, Published 19/10/2016

In computing science, much attention has been paid to generic methods for sharing data in secure infrastructures. These sorts of methods and infrastructures are, of course, necessary for sharing healthcare data. The authors are, however, a long way away from being able to realise the potential of medical and healthcare data to support the sorts of extensive, data-intensive experiments being demanded by precision and stratified medicine. A key architectural problem remaining to be solved is how to maintain control of patient data within the governance of local data jurisdictions, while also allowing these jurisdictions to engage with experiment designs that (because of the need to scale to large population sizes) may require analyses across several jurisdictions. This study provides a snapshot of architectural work underway to provide a clear, effective structure of data safe havens within jurisdictions. It then describes how formally specified experiment designs can be used to enable jurisdictions to work together on experiments that no single jurisdiction could tackle alone. The authors’ current work relates to two jurisdictions (in Scotland and in Italy), but the architecture and methods are general across similar jurisdictions.

References

1. 1)
  - 3. Scottish Government, Health Informatics Research Advisory Group: ‘A Health and Biomedical Informatics Research Strategy for Scotland: Enhancing Research Capability in Health Informatics for Patient and Public Benefit 2015–2020’, 2015, available at: http://www.gov.scot/Resource/0047/00475145.pdf.
2. 2)
  - 8. Safran, C., Bloomrosen, M., Hammond, W.E., et al: ‘Toward a national framework for the secondary use of health data: an American Medical Informatics Association White Paper’, J. Am. Med. Inf. Assoc., 2007, 14, (1), pp. 1–9 (doi: 10.1197/jamia.M2273).
3. 3)
  - 7. Knoppers, B.M.: ‘Framework for responsible sharing of genomic and health-related data’, HUGO J., 2014, 8, (3), pp. 1–6.
4. 4)
  - 11. Burton, P.R., Murtagh, M.J., Boyd, A., et al: ‘Data safe havens in health research and healthcare’, Bioinformatics, 2015, 31, (20), pp. 3241–3248 (doi: 10.1093/bioinformatics/btv279).
5. 5)
  - 16. ‘Research Data Management Platform’, http://medicine.dundee.ac.uk/research-data-management-platform-rdmp, accessed 27 May 2016.
6. 6)
  - 4. Cusack, C.M., Hripcsak, G., Bloomrosen, M., et al: ‘The future state of clinical data capture and documentation: a report from AMIA's 2011 Policy Meeting’, J. Am. Med. Inf. Assoc., 2013, 20, (1), pp. 134–140 (doi: 10.1136/amiajnl-2012-001093).
7. 7)
  - 13. Pavis, S., Morris, A.D.: ‘Unleashing the power of administrative health data: the Scottish model’, Public Health Res. Pract., 2015, 25, (4), pp. 1–6 (doi: 10.17061/phrp2541541).
8. 8)
  - 17. Robertson, D.: ‘A lightweight coordination calculus for agent systems’, in Leite, J., Omicini, A., Torroni, P., et al (Eds.): ‘Declarative agent languages and technologies II’ (Springer, Heidelberg, 2005), (LNCS (LNAI), 3476), pp. 183–197.
9. 9)
  - 18. Robertson, D.: ‘Lightweight coordination calculus for agent systems: retrospective and prospective’, in Sakama, C., Sardina, S., Vasconcelos, W., et al (Eds.): ‘Declarative agent languages and technologies IX’ (Springer, Berlin, 2012), (LNCS (LNAI), 7169), pp. 84–89.
10. 10)
  - 9. Lea, N.C., Nicholls, J., Dobbs, C., et al: ‘Data safe havens and trust: toward a common understanding of trusted research platforms for governing secure and ethical health research’, JMIR Med. Inf., 2016, 4, (2), pp. e22 (doi: 10.2196/medinform.5571).
11. 11)
  - 1. Taylor, M.: ‘Information governance as a force for good? Lessons to be learnt from care.data’, ScriptEd, 2014, 11, (1), pp. 1–8 (doi: 10.2966/scrip.110114.1).
12. 12)
  - 12. Laurie, G., Ainsworth, J., Cunningham, J., et al: ‘On moving targets and magic bullets: Can the UK lead the way with responsible data linkage for health research?’, Int. J. Med. Inf., 2015, 84, (11), pp. 933–940 (doi: 10.1016/j.ijmedinf.2015.08.011).
13. 13)
  - 10. Ford, D.V., Jones, K.H., Verplancke, J.P., et al: ‘The SAIL Databank: building a national architecture for e-health research and evaluation’, BMC Health Serv. Res., 2009, 9, (1), pp. 1–12 (doi: 10.1186/1472-6963-9-157).
14. 14)
  - 5. The Academy of Medical Sciences: ‘Data in safe havens’. Workshop report2014, available at: http://www.acmedsci.ac.uk/policy/policy-projects/data-in-safe-havens/.
15. 15)
  - 14. Atherton, I.M., Lynch, E., Williams, A.J., et al: ‘Barriers and solutions to linking and using health and social care data in Scotland’, Br. J. Soc. Work, 2015, 45, (5), pp. 1–9 (doi: 10.1093/bjsw/bcv047).
16. 16)
  - 2. The Scottish Government: ‘A Charter for Safe Havens in Scotland: Handling Unconsented Data From National Health Service Patient Records to Support Research and Statistics’, 2015, available at: http://www.gov.scot/Resource/0048/00489000.pdf.
17. 17)
  - 6. Jones, K.H., Ford, D.V., Jones, C., et al: ‘A case study of the secure anonymous information linkage (SAIL) gateway: a privacy-protecting remote access system for health-related research and evaluation’, J. Biomed. Inf., 2014, 50, pp. 196–204 (doi: 10.1016/j.jbi.2014.01.003).
18. 18)
  - 15. Witham, M.D., Frost, H., McMurdo, M., et al: ‘Construction of a linked health and social care database resource – lessons on process, content and culture’, Inf. Health Soc. Care, 2015, 40, (3), pp. 229–239 (doi: 10.3109/17538157.2014.892491).

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