Charter for Safe Havens in Scotland: Handling Unconsented Data from National Health Service Patient Records to Support Research and Statistics.

Footnotes

1. Health Informatics Research Advisory Group (2015). A Health and Biomedical Informatics Research Strategy for Scotland; Enhancing research capability in health informatics for patient and public benefit. http://www.gov.scot/Resource/0047/00475145.pdf

2. Thomas & Walport (2008). Data Sharing Review. http://webarchive.nationalarchives.gov.uk/+/http:/www.justice.gov.uk/docs/data-sharing-review.pdf

3. UK Administrative Data Research Network (2012). Improving Access for Research and Policy. http://www.esrc.ac.uk/files/publications/themed-publications/improving-access-for-research-and-policy/

4. Caldicott (2013). Information: to Share or Not to Share? The Information Governance Review. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/192572/2900774_InfoGovernance_accv2.pdf

5. Data Controller should be taken to mean the individual NHS board or organisation with responsibilities as a Data Controller, as defined in the Data Protection Act 1998, and registered with the Information Commissioner’s Office, agents acting on their behalf, such as individual Caldicott Guardians, and/or governance or scrutiny mechanisms operating with delegated decision making on their behalf.

6. The Public Benefit and Privacy Panel for Health and Social Care http://www.informationgovernance.scot.nhs.uk/

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

8. SHIP Blueprint (2012). http://www.scot-ship.ac.uk/publications.html

9. SHIP Guiding Principles and Best Practices (2010).
http://www.scot-ship.ac.uk/sites/default/files/Reports/Guiding_Principles_and_Best_Practices_221010.pdf

10. http://www.isdscotland.org/Products-and-Services/EDRIS/

11. http://www.farrinstitute.org/centre/Scotland/3_About.html

12. The operation of SILC and the technical operation of the federated network will be published elsewhere.

13. Davidson et al. (2012) Public acceptability of cross-sectoral data linkage. Deliberative research findings. Scottish Government. http://www.scotland.gov.uk/Publications/2012/08/9455

14. Davidson et al. (2013) Public acceptability of data sharing between the public, private and third sectors for research purposes. Scottish Government. http://www.scotland.gov.uk/Publications/2013/10/1304

15. Armstrong et al. Public attitudes to research governance. A qualitative study in a deliberative context. Wellcome Trust. http://www.wellcome.ac.uk/stellent/groups/corporatesite/@policy_communications/documents/web_document/wtx038443.pdf

16. Within the NHS this is the NHS N3 Network or equivalent and processed in line with NHS security standards and Health Board policy.