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Scottish Health Informatics Programme (SHIP)

Scottish Health Informatics Programme (SHIP). Anthea Springbett NHS Information Services Division. Structure. Information Services Division (ISD) Who are we? What do we do? What is SHIP? Indexing & Linking Data security. ISD’s Purpose

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Scottish Health Informatics Programme (SHIP)

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  1. Scottish Health Informatics Programme (SHIP) Anthea Springbett NHS Information Services Division

  2. Structure • Information Services Division (ISD) • Who are we? • What do we do? • What is SHIP? • Indexing & Linking • Data security

  3. ISD’s Purpose To deliver effective national and specialist intelligence services to improve the health and wellbeing of people in Scotland ISD’s Vision To be a valued partner in improving health and wellbeing in Scotland, by providing world class intelligence service

  4. Research community Scottish Government Local authorities Education NHS VisionTo be a valued partner in improving health and wellbeing in Scotland, by providing world class intelligence service Better health Better information Better decisions

  5. Collecting data from cradle to grave … Mental Health SMR04 Dental SMR13 Hospital Admissions SMR01 Out patients SMR00 Scottish Birth Record SBR GP consultations BIRTH DEATH Maternity Prescribing Screening Immunisation Cancer registry A&E Cancer registrations SMR06 Child health surveillance

  6. Caldicott Principles • Justify the purpose(s) of using confidential information • Do not use patient-identifiable information unless it is absolutely necessary • Use the minimum necessary patient-identifiable information that is required • Access to patient-identifiable information should be on a strict need-to-know basis • Everyone with access to patient-identifiable information should be aware of their responsibilities • Understand and comply with the law

  7. ISD Medical Record Linkage Team • Experience & expertise • Probabilistic linkage • CHI seeding • Automated indexing process • Clerical review • Health & cross-sectoral linkages • Data transmission

  8. What is SHIP? • Scottish Health Informatics Programme • Funded by Wellcome Trust, MRC, ESRC • Academic/NHS consortium • 2009/10 to 2012/13 • SHIP is: • “an ambitious, Scotland-wide research platform for the collation, management, dissemination and analysis of Electronic Patient Records (EPRs)”

  9. Core Provisioning data sets for research (SHIS-R) Governance Engaging researchers Public engagement Research EPR support of clinical trials National epidemiology Pharmacovigilance Demographic, socioeconomic and environmental data linkage SHIP programmes

  10. ISD’s contribution to SHIP (SHIS- R) • Procedures for secure access • National routine NHS Scotland datasets available to researchers throughout UK • Single interface for linkage with external data sets • Portal for knowledge about availability of appropriate health related data • Metadata

  11. Approval of linkage requests PAC and Data Controllers Data Source 1 Data Source 2 Data Source 3 Acute hospital admissions Deaths Local Authority dataset Indexing Service Data Archive Disclosure Control Linkage agent Project work space I’d like to link some data Safe Haven

  12. Expected benefits of SHIP • High standards of governance and technical processes • Better data security and less data travel • Dedicated research co-ordinators to assist researchers with projects • Register of approved researchers • Statistical disclosure control to protect patient confidentiality • Excellent research that has a beneficial impact on society and the economy

  13. Data transmission • Receipt of identifiers for Indexing • Return of project code and linkage IDs • Receipt of ‘pay load’ data • Return of results • Any of the above could be from within or outwith NHS net

  14. Indexing service • ISD currently runs an indexing service • eg. maintains hub for eCare • Same process for SHIP indexing • Requires secure data transmission • Personal identifiers always separate from payload

  15. Indexing Service • The indexing service uses CHI as a population reference file • Use of population reference file maximises leverage of linkage • It does not release CHI numbersor CHI data, but rather index numbers (linkage IDs) • Different index numbers (linkage IDs) are used for each data set to be linked • Identifiers and ‘payload data’ are always kept separate

  16. Linkage agent • Operating features: • Receipt of data items • Receipt of indexing codes • Linkage + storage of files • Statistical software • Access via dumb terminals • Local and remote • High performance for researchers

  17. Dumb terminal access • ISD + (~5) other locations in Scotland • Secure physical setting • Login to ISD linkage agent (via Citrix) • Remote login to other linkage agents • Audit of activity

  18. Data archiving • Secure long term storage • Data travel: archive linkage agent • Destruction of files • Audit

  19. The role of the research coordinator Data permissions Data release Local Authority data controller National PAC (ISD, NRS) Local PAC or equivalent (NHS HB) Local Authority dataset ISD dataset Local HB dataset Referral of data request National Indexing Service Data request Research Coordinator Creation and storage of linked dataset Linkage agent (NSS) Advice & guidance Safe haven Training Researcher approval Researcher approval and secure access

  20. Timescales • The IT build for the indexing service has been completed and is in place. • The linkage agent build is under negotiation. • The whole system should be live by early 2012.

  21. Sail gives way to steam … anthea.springbett@nhs.net www.scot-ship.ac.uk

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