Research data network, September 2016, Katie Wilde, University of Aberdeen, Grampian Safe Haven

1. “'Safe havens' should be developed as an
environment for population-based research
in which the risk of identifying individuals is
minimised… researchers are bound by a
strict code, preventing disclosure of any
personally identifying information, and
providing sanctions in case of breach of
confidentiality.”
(Thomas and Walport, Data Sharing Review
Report 2008)

2. DaSH: Staff
• All staff employed by UoA
• Posts funded by UoA/NHSG R&D
• All staff have NHSG honorary contracts
• All staff have valid GCP training
• All staff have valid Information Governance
Training
Why Safe Haven
• 2008 - Data Sharing Review Report, Thomas and Walport
• 2011 - Blueprint for Health Records Research in Scotland, Scottish Health
Informatics Programme
• 2012 - Data linkage Framework for Statistics and Research, Scottish
Government
• 2013 - Information: to share or not to share? The Information
Governance Review, Dame Fiona Caldicott

3. • 1 of 5 Safe Havens
• Joint venture with NHS Grampian
• Federated network
• Facilitate sharing/access of data
Grampian
DaSH
HIC
ISD: eDRIS
National Safe
Haven
GGC
Safe Haven Lothian
Safe Haven

4. Grampian Data Safe Haven
• Established in May 2012
• Over 175 projects
• ‘Virtual’ access & ‘Farr’ Researcher room
• Team of analysts, research coordinators and
an administrator

5. • Safe setting
• Safe people
• Safe projects
• Safe outputs
Risk to patient
confidentiality
Opportunities for
linkage research
Managing risk and enabling health benefit
Safe Haven: For unconsented linked data

6. • Identifiable data is stored on NHS
Servers
Safe storage, linkage and analysis of data
Safe Setting:

8. • Identifiable data is stored on NHS
Servers
• Only trained ‘approved’ analysts can
access identifiable information
• A different analyst links the data
• No patient level data leaves the safe haven
Safe storage, linkage and analysis of data
• Linked datasets are stored on
separate servers
• Access to linked data restricted
Safe Setting:

9. • Researchers cannot access patient
identifiers
• No patient level data leaves the
safe haven
Access to linked data for approved researchers only
• Only named and trained ‘approved’
researchers can access linked data sets
• Researchers analyse anonymous
linked data
• Penalties for misconduct
• Investigators sign a Declaration to
adhere to working practices
Safe People:

10. • All appropriate approvals in place:
• Sponsorship
• Public Benefit and Privacy
Panel for Health and Social
Care
• Research Ethics
• NHS R&D
• Caldicott Guardian
• Data Custodian
All study approvals in place
• Clear data management plan
Safe Projects:

11. • Research outputs are released
after disclosure checks
No individual patient level data is released
• No individual patient level data
can be printed, copied or removed
from the safe haven
Safe Outputs:

12. Benefits for researchers
Secure, managed access to data for research
• Support for data linkage research
• Support for Data Management Plans and permissions

13. DLP and DMP
Transparency

14. Benefits for researchers
Secure, managed access to data for research
• Support for data linkage research
• Support for Data Management Plans and permissions
• Remote access desktop
• Safe Room ‘Farr Scotland Researcher Lab’
• Physical safe room - Dumb terminal access
• Secure Pods
• Farr Scotland Institute

15. Benefits for data custodians
Secure, managed access to data for research
• Data stays on site
• Support for data linkage research
• Datasets for multiple use
• Data sharing for collaboration
• Sensitive data
• Large extracts
• Data release policy e.g. small numbers

16. What have we learntThe Good
• Virtual environment
• Improved governance
• Allowed projects to go ahead
• Got researchers ‘thinking’
• DMPs – better data management
• Removed ‘old school’ methods
• Improved accountability
• Enabled collaboration
• Developed working relationships/partnerships

18. What have we learntThe Good
• Virtual environment
• Improved governance
• Allowed projects to go ahead
• Got researchers ‘thinking’
• DMPs – better data management
• Removed ‘old school’ methods
• Improved accountability
• Enabled collaboration
• Developed working relationships/partnerships
• Improved Communication
• Improved linkage specifications
• Timely checks

19. The Bad
• Cultural change
And The Ugly
• Software issues
• Capacity: Compute & People
• Disclosure checking

20. The future
Accreditation
HPC
Consented data
• Genomics
• Proportionate review

21. Acknowledgements
Professor Corri Black, Clinical Lead
Dr Sharon Gordon, Research Coordinator
Ms Steph Hall, Research Coordinator
Mr Alasdair Coutts, Data Programmer/Analyst
Mr Alastair Soutar, Data Programmer/Analyst
Mr Artur Wozniak, Data Programmer/Analyst
Mrs Pam Rebecca, Administrator
Mr Derek Turner, Administrator
UOA IT Services
NHSG Health Intelligence
NHSG eHealth
NHSG R&D Office

22. Any questions?

23. Transforming the world
with greater knowledge
and learning