“'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)
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
• 1 of 5 Safe Havens
• Joint venture with NHS Grampian
• Federated network
• Facilitate sharing/access of data
Grampian DaSH
HIC
ISD: eDRISNational Safe
Haven
GGC Safe Haven Lothian
Safe Haven
Grampian Data Safe Haven • Established in May 2012
• Over 175 projects
• ‘Virtual’ access & ‘Farr’ Researcher room
• Team of analysts, research coordinators and an administrator
•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
• Identifiable data is stored on NHS Servers
Safe storage, linkage and analysis of data
Safe Setting:
• 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:
• 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:
• 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:
• 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:
Benefits for researchers
Secure, managed access to data for research
• Support for data linkage research• Support for Data Management Plans and permissions
DLP and DMP
Transparency
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
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
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
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
The Bad• Cultural change
And The Ugly• Software issues• Capacity: Compute &
People• Disclosure checking
The future
Accreditation
HPC
Consented data
• Genomics
• Proportionate review
Acknowledgements
Professor Corri Black, Clinical LeadDr Sharon Gordon, Research CoordinatorMs Steph Hall, Research CoordinatorMr Alasdair Coutts, Data Programmer/AnalystMr Alastair Soutar, Data Programmer/AnalystMr Artur Wozniak, Data Programmer/AnalystMrs Pam Rebecca, AdministratorMr Derek Turner, AdministratorUOA IT ServicesNHSG Health Intelligence NHSG eHealthNHSG R&D Office
Any questions?
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