“'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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