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 ISD’s Vision 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

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

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 Child health surveillance Cancer registrations SMR06

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

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

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)”

SHIP programmes Core Research 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

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

PAC and Data Controllers 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

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

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

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

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 numbers or 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

Linkage agent Local and remote 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

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

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

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

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.

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