Successfully reported this slideshow.
We use your LinkedIn profile and activity data to personalize ads and to show you more relevant ads. You can change your ad preferences anytime.

Grampian safe haven, research data network

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

Related Books

Free with a 30 day trial from Scribd

See all
  • Be the first to comment

  • Be the first to like this

Grampian safe haven, research data network

  1. 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. 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. 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. 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. 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. 6. • Identifiable data is stored on NHS Servers Safe storage, linkage and analysis of data Safe Setting:
  7. 7. • 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:
  8. 8. • 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:
  9. 9. • 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:
  10. 10. • 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:
  11. 11. Benefits for researchers Secure, managed access to data for research • Support for data linkage research • Support for Data Management Plans and permissions
  12. 12. DLP and DMP Transparency
  13. 13. 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
  14. 14. 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
  15. 15. 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
  16. 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 • Improved Communication • Improved linkage specifications • Timely checks
  17. 17. The Bad • Cultural change And The Ugly • Software issues • Capacity: Compute & People • Disclosure checking
  18. 18. The future Accreditation HPC Consented data • Genomics • Proportionate review
  19. 19. 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
  20. 20. Any questions?
  21. 21. Transforming the world with greater knowledge and learning

×