Publication - Agreement

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

Published: 16 Nov 2015
Part of:
Health and social care
ISBN:
9781785444968

The Charter for Safe Havens sets out the agreed principles and standards for the routine operation of Safe Havens in Scotland where data from electronic records can be used to support research when it is not practicable to obtain individual patient consent while protecting patient identity and privacy.

21 page PDF

351.0 kB

21 page PDF

351.0 kB

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

21 page PDF

351.0 kB

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.


Contact

Email: Pamela Linksted