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Grampian safe haven, research data network
Safe havens" should be developed as an environment for population-based research where the risk of identifying individuals is minimized. Researchers in safe havens are bound by strict confidentiality codes preventing disclosure of personally identifying information and providing sanctions for breaches of confidentiality.
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Grampian safe haven, research data network
- 1. “'Safe havens' shouldbe 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 • Allstaff 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 of5 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 SafeHaven • 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 datais stored on NHS Servers Safe storage, linkage and analysis of data Safe Setting:
- 8. • Identifiable datais 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 cannotaccess 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 appropriateapprovals 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 outputsare 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
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- 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 datacustodians 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 welearntThe 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 welearntThe 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 • Culturalchange 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
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- 23. Transforming the world withgreater knowledge and learning