2. Agenda Problem Existing Approaches The e-Lab Is DRM the solution?

3. Climate Change

4. Problem Potentially identifiable data required for effective research Individuals have a right to confidentiality and privacy Potentially identifiable data should not be: –Redistributed Release under defined conditions –Linked to other data Risk of deductive disclosure Potentially identifiable data should be: –Stored securely –Destroyed after use

5. Potentially Identifiable Information Individual records even if they do not include variables, such as names, full postcodes, and dates of birth which would make them obviously identifiable; Tabular data, based on small geographic areas, with cell counts of fewer than five cases/events (or where counts of less than five can be inferred by simple arithmetic) – hereafter referred to as “sparse cells” Tabular data containing cells that have underlying population denominators of less than approximately 1,000 –Source UKACR

6. Existing approaches Locked rooms, locked down machines –Used by many national statistical services Does not scale

7. Existing approaches Policy –User bound by terms and conditions or contract of employment or professional governance bodies

8. UKACR Policy the intended use(s) of the data should be stated clearly the use(s) of the data should be justified and the data should not be used for any other purpose(s) the data should not be passed on to other third parties or released into the public domain the data should be kept securely for the period of time that can be justified by the stated purpose, and then destroyed no attempt should be made to identify information pertaining to particular individuals or to contact individuals no attempt should be made to link the data to other data sets, unless agreed with the data providers

9. Existing approaches Policy –User bound by terms and conditions or contract of employment or professional governance bodies Policing –Doesn’t scale

10. North West e-Health Joint Project: SRFT, SPCT, UoM Founded on UoM/ Salford NHS experience and expertise Based on the establishment of an e-Lab federation: “that will allow the partners to pool and develop their expertise and resources, acting together for mutual benefit and for the benefit of other stakeholders and clients” NWDA core-funding Potential for self-sustaining entity

11. What is an e-Lab...an information system bringing together data, analytical methods and people for timely, high-quality decision-making

14. Information Governance Designed for minimal disclosure Only release items that user “Needs to know” Only release items that user “Has the right to know” Determined by the “e-Lab Governance Board”

15. Information Governance Technical safeguards –Audit trails & monitoring –Anonymisation and Inference control Operational procedures –Users sign up to terms and conditions of use; bound by employment contracts –Spot checks Governance Board + NREC Research Database Approval

16. NHS Trust E-Lab Data Store Governance Users EHR

17. Clinical Data Non-clinical Data Clinical Data Integrated EHR E-Lab Repository Non-clinical Data 2. Pseudonymisation, classification and integration 1. Integration of primary and secondary care records Trust Systems Trust e-Lab

18. User Data Store 4. Anonymisation and inference control 8. Storage 9. Data analysis and visualization Access Control e-Lab Tools 1.User logs on and submits query 2. Access control module authorizes request 3. Perform Data Query E-Lab Repository Trust e-Lab

19. NHS NHS Trust E-Lab Data Store Governance Users EHR NHS Trust E-Lab Data Store Governance Users EHR NHS Trust E-Lab Data Store Governance Users EHR NWeH Broker NWeH Users Federated E-Lab Governance

20. Broker User Data Store 5. Per request keyed pseudonymisation 6. Data integration 7. Anonymisation and inference control 8. Storage 9. Data analysis and visualization NHS Trust e-Lab NWeH – e-Lab Federation NHS Trust e-Lab E-Lab Repository E-Lab Repository Access Control e-Lab Tools 1.User logs on and submits query 2. Access control module authorizes request 3. Broker performs distributed query; generate pseudonym keys 5. Per request keyed pseudonymisation

21. Data Users e-Lab Broker e-Labs Secondary Pseudonymised Data Flows Pseudonymised Data Flows

22. DRM Solution? DRM used to prevent re-distribution DRM used to prevent modification DRM used to prevent linking to other data

23. DRM problems Not fail safe? Better than just stopping the “casual attacker”? Perception is easy to crack or by-pass