SPIRE Project Scottish Primary Care Information Resource

1. SPIRE ProjectScottish Primary Care Information Resource SCIMP Conference 2013

2. Session Aims To provide an overview of the SPIRE project and the service that will be developed. To answer any questions that you may have about SPIRE.

3. What is SPIRE? Objective: • To provide a safe and secure national data extraction system from General Practice Clinical IT systems in Scotland.

4. Questions covered by Presentation • How did we get here? • What are the benefits? • How will data be used? • What types of data will be extracted? • How will SPIRE safeguard patient confidentiality? • What options are there for GPs & patients in respect of participation in SPIRE? • What are the timescales for delivery? • What progress has been made?

5. Background to SPIRE • Primary care records contain potentially the most comprehensive source of data on health of the Scottish population • vast majority of population registered with a GP • estimated 24M consultations recorded • HOWEVER – There were limitations of previous national sources (PTI / PCCIU) and • Approaches to data extraction varies between NHS Boards • Variety of solutions of varying sophistication • Duplication • GP workload / IT system performance • Governance

6. Lead-up to Project • Data Extraction Short Life Working Group set up by Primary Care PMG • Representatives from BMA, SG, SCIMP, eHealth, NSS, Academia, NHS Boards • Asked to propose a way forward with regard to data, information & extraction requirements • SLWG proposed the development of a National GP Information Service hosted by NSS. This was endorsed by PC-PMG & eHealth leads • First Project Board met in April 2013

7. Benefits of SPIRE • National mechanism for data extract requests • Reduced duplication • Reduced impact on practice workloads • Standard processes • Transparent governance • Standardised approach to Information Governance • Information & Intelligence to support a number of appropriate uses • Filling the well known gap data/intelligence sources

8. Uses at National / NHS Board level

9. What is SPIRE? • SPIRE will • Develop a national data extraction system to: • provide routine extracts to support QOF payments; • maintain a national dataset; and • perform bespoke extracts (e.g. approved research) • Provide a National Analysis & Intelligence Service • Demonstrate robust Information Governance

10. National Dataset Aims to cover majority of user information needs Specification of dataset will be agreed via the Independent Advisory Group (IAG) Will include both aggregate & pseudonymised patient-level data Populated & maintained by aggregate and pseudonymised patient-level data extracts covering Demographics Read codes Encounters Prescriptions Patient identifiers extracted and stored separately primarily to facilitate data linkage National dataset information will only be accessed by named and appropriately authorised individuals

11. Patient Registration Form GPs are the data controllers: When a patient joins a new practice, the patient registration form includes the following undertaking: “How we use your information” The information you have provided will tests, hospital referrals and correspondence. Your name and demographic information will be passed to NHS national services where it be held on the CHI index which is used for registration and transfer of records. NHS Scotland uses your information to assist in provision and improvement of NHS services and when we do this we make sure that the information which identifies you is separated from your health information and anonymised. Health condition and treatment information which could identify you will not be used for research purposes by the NHS unless you have consented to this. For more information on how NHS Scotland uses your personal information visit www.nhsnss.org

12. Information Governance • Anonymised data will be the ‘norm’ • Likely to be the case for vast majority of access/releases • Even when data linkage occurs (e.g. with national secondary care datasets) • Explicit patient consent required where justifiable and authorised need to release identifiable data to customers • Disclosure control • Patients can opt-out of any of their identifiable data being extracted • Data will be erased if they opt in and then opt out • Programme of awareness-raising covering data content, benefits, controls, how to ‘opt out’

13. Information Governance – Safe Haven • Environment owned and controlled by NSS • Responsible for ensuring IT infrastructure facilitates adherence to agreed IG principles • Strict access control – access to only what is required for an approved purpose • Patient identifiers stored separately from ‘payload’ • Pseudonymised ID to link data at individual level within safe haven • Ability to link data with other national datasets (if approved) • User access audit trails • Adherence to data retention policy

14. Independent Advisory Group • Include GP and Patient representation • To oversee / monitor SPIRE to ensure the IG principles are adhered to • Approval of data extractions/linkages and user access • Assess the need for patient consent • Ensuring NSS as the service provider keeps practices & patients informed of all aspects of the Service • Providing a vehicle for participating practices to influence new developments in relation to the service.

15. Data Linkage Only if approved by IAG & PAC Any linkage required will utilise the NSS Electronic Data Research & Innovation Service (eDRIS) Separation of patient identifiers and payload data in linkage process Production of anonymised data at individual level In the very rare occasions where patient identifiable data are needed for research, explicit patient consent will be required Provision of safe & secure access for researchers

16. GP Participation Options • GP practice consent sought prior to any data extract • Case-by-case basis • Consent may be to recurring data extraction (e.g. National dataset) • Prior notification • No response = opt-out • Right to opt out after opting in (data erasure) • Ability to view content of extracts • Patient opt-out respect even if GP opts-in • Participation is voluntary; no payment to practices

17. Benefits to GP Practices Reduced workload associated with data extraction & multiple requests for information Standardised and transparent governance around data extraction Provision of information intelligence e.g. practice workload, activity & demographics comparative information e.g. referral rates QOF ‘drill-down’ or ‘gap’ analysis risk stratification Potential options: Reporting/querying functionality in extract tool Create/develop bespoke tools e.g. QOF dashboard

18. SPIRE Progress Summary Key Milestones to date • Outline Business Case signed off • IG Principles & Arrangements signed off • Extensive Stakeholder engagement Next Steps • Procurement of Data Extraction Mechanism • NSS IT Infrastructure development • Set up IAG • Further develop Communication/Engagement Strategy • Identifying ‘pathfinder’ practices

19. How can I find out more? • Visit: www.spire.scot.nhs.uk • Email: nss.spire@nhs.net • Twitter: @SPIREScotland

20. SPIRE Questions?