A Health and Biomedical Informatics Research Strategy for Scotland

This strategy sets out key areas for action and specific recommendations from the Health Informatics Research Advisory Group (HIRAG) on how Scotland should respond to the opportunities and challenges around the secure use of routinely collected patient data for research.


1. The Healthcare Quality Strategy for NHSScotland. The Scottish Government, May 2010 (http://www.scotland.gov.uk/Resource/Doc/311667/0098354.pdf)

2. Data Vision for Scotland. Data Management Board. The Scottish government. April 2014. (http://www.scotland.gov.uk/Resource/0044/00448438.pdf)

3. UK Data Forum (2012) UK Strategy for Data Resources for Social and Economic Research. A five-year plan to inform and guide the development and utilisation of data and related resources for social and economic research (http://www.esrc.ac.uk/_images/UKDF-strategy-data-resources_tcm8-26806.pdf)

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10. Mackay DF, Nelson SM, Haw SJ, et al. (2012) Impact of Scotland's Smoke-Free Legislation on Pregnancy Complications: Retrospective Cohort Study. PLoS Med 9(3): e1001175. doi:10.1371/journal.pmed.1001175

11. McClements PL, Madurasinghe V, Thomson C, et al. Impact of the UK colorectal cancer screening pilot on incidence, stage distribution and mortality trends. Cancer Epidemiology 2012; 36(4): e232-42

12. Libby G, Brewster DH, McClements PL, et al. The impact of population based faecal occult blood test screening on colorectal cancer mortality: a matched cohort study. Br J Cancer 2012; 197(2): 255-9

13. Ford I, Murray H Packard C et al. Long-Term Follow-up of the West of Scotland Coronary Prevention Study, N Engl J Med 2007;357:1477-86

14. Barbone F, McMahon AD, Davey PG, et al. Association of road-traffic accidents with benzodiazepine use. The Lancet, 352 (1998) 1331-1336.

15. Libby G, Donnelly LA, Donnan PT, et al. New users of metformin are at low risk of incident cancer: a cohort study among people with type 2 diabetes. Diabetes Care 32 (2009) 1620-1625

16. A National GP Information Service. Proposal by the Primary Care Data Extraction Short Life Working Group. National Services Scotland. October 2012. See also: Delivering Quality in Primary Care: Progress Report, SGHD, 2012. (http://www.scotland.gov.uk/Resource/0039/00395413.pdf)

17. Thomas, R and Walport M, Data Sharing Review Report, 2008. http://systems.hscic.gov.uk/infogov/links/datasharingreview.pdf/view

18. The UK Administrative Data Research Network: Improving Access for Research and Policy. Report from the Administrative Data Taskforce. Economic and Social Research Council. December 2012. (http://www.esrc.ac.uk/_images/ADT-Improving-Access-for-Research-and-Policy_tcm8-24462.pdf)

19. The Information Governance Review. The Department of Health. April 2013. (https://www.gov.uk/government/news/health-secretary-to-strengthen-patient-privacy-on-confidential-data-use)

20. Boyle, P., Feijten, P., Feng, F., Hattersley, L., Huang, Z., Nolan, J. & Raab, G. (2009) Cohort Profile: The Scottish Longitudinal Study (SLS), International Journal of Epidemiology 38(2):385-392.

21. Electronic Data Research and Innovation Service (eDRIS). NHS National Services Scotland http://www.isdscotland.org/Products-and-Services/eDRIS/)

22. A Blueprint for Health Records Research in Scotland 2012 (http://www.scot-ship.ac.uk/sites/default/files/Reports/SHIP_BLUEPRINT_DOCUMENT_final_100712.pdf)

23. SHIP Guiding Principles and Best Practices. A document of the SHIP Information Governance Working Group (http://www.scot-ship.ac.uk/sites/default/files/Reports/Guiding_Principles_and_Best_Practices_221010.pdf.)

24. Joined-up Data for Better Decisions: A strategy for improving data access and analysis. Scottish Government. November 2012. (http://www.scotland.gov.uk/Resource/0040/00408151.pdf)

25. Joined-up data for better decisions: Guiding Principles for Data Linkage. The Scottish Government. November 2012. (http://www.scotland.gov.uk/Resource/0040/00407739.pdf)

26. Technical Consultation Paper on the Design of the Data Sharing and Linking Service (http://www.isdscotland.org/Products-and-Services/eDRIS/DSLS-consultation/DSLS-consultation-final-gd-060313.pdf)

27. Creating a Global Alliance to Enable Responsible Sharing of Genomic and Clinical Data http://www.ebi.ac.uk/sites/ebi.ac.uk/files/shared/images/News/Global_Alliance_White_Paper_3_June_2013.pdf

28. Council of Economic Advisers First Annual Chair's Report to the First Minister. Published 28th March 2013 (http://www.scotland.gov.uk/Resource/0041/00417465.pdf)

29. Academy of Medical Sciences (2010). A new pathway for the regulation and governance of health research (http://www.acmedsci.ac.uk/viewFile/publicationDownloads/newpathw.pdf)

30. Report on the Review of Patient-Identifiable Information. The Department of Health. 1997. (http://www.wales.nhs.uk/sites3/Documents/950/DH_4068404.pdf)

31. NRS Permissions Coordination Centre, R&D Permissions times in Scotland www.nhsresearchscotland.org.uk/237_RDpermissiontimesinScotland.html

32. Ford DV et al. The SAIL Databank: building a national architecture for e-health research and evaluation. BMC Health Services Research 2009, 9:157. (http://www.biomedcentral.com/1472-6963/9/157).

33. NHSScotland Caldicott Guardian's Principles into Practice - June 2012 v2 (http://www.knowledge.scot.nhs.uk/media/CLT/ResourceUploads/4014631/Caldicott%20Guardian%20Manual%20Scotland%20-%20June%202012.pdf)

34. Mackenzie IS, Wei L, Paterson KR, Macdonald TM. Cluster randomised trials of prescription medicines or prescribing policy- public and general practitioner opinions in Scotland. Br J Clin Pharmacol. 2012;74:354-61

35. Davidson S et al. Public acceptability of cross sectoral data linkage. Deliberative research findings. Edinburgh, Scottish Government, 2012. (www.scotland.gov.uk/socialresearch)

36. Davidson S et al. Public Acceptability of Data Sharing Between the Public, Private and Third Sectors for Research Purposes. Edinburgh, Scottish Government, 2013. (http://www.scotland.gov.uk/Publications/2013/10/1304)


Email: Pamela Linksted

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