Scottish Cancer Registry and Intelligence Service (SCRIS)

Innovative Healthcare Delivery Programme (IHDP) Aims to harness the power of informatics to deliver value rapidly to patients, health care professionals and the wider NHS through collaboration with academia, industry and the third sector

IHDP High Level Aims As a first priority to develop a national cancer data infrastructure for Scotland (SCIF), linking primary, secondary, and ultimately social, care data to improve patient outcomes. This is the demonstrator workstream to inform the application of the IHDP’s approach to other conditions; - e.g. rare diseases

Cancer mortality1 in Scotland, UK and EU 1990-2015 Age-standardised mortality rate per 100,000 population (using ESP19762) Source: European Health for All database (WHO), National Records of Scotland All cancers (ICD-10 C00-C97) 1976 version of the European Standard Population

Barriers Multiple heterogeneous datasets Technical Organisational This is complex stuff!

Beating Cancer: Ambition and Action (March 2016)

Scottish Cancer Registry and Intelligence Service (SCRIS)

70 years of the NHS 70 years of cancer registration Guess the decade Publication of ‘the Atlas of Cancer in Scotland’ 1980s First use of computers for regional cancer registries 1950s First use of computers for regional cancer registries – 1958 Glasgow Registry begins to collect maiden name – 1972 Publication of ‘the Atlas of Cancer in Scotland’ – this was the first incidence atlas in the world – 1986 SCR contribution to the International Cancer Benchmarking Partnership commences 2000s

70 years of the NHS 70 years of cancer registration Guess the decade Regional Directors agree to code CIN III as ICD-9 233.1 1980s Glasgow Registry begins to collect maiden name 1970s SCR contribution to the International Cancer Benchmarking Partnership commences - 2009 Scottish Cancer Registry and Intelligence Service established - 2018 Scottish Cancer Registry and Intelligence Service established 2010s

Scottish Cancer Registry and Intelligence Service 1. Faster availability of cancer incidence data. Lag time reduced by 50% (ambition is to reduce from 12 months to 6 months) 2. Include new data sources. Including enhanced chemotherapy, enhanced radiotherapy, cancer audit/QPI and molecular pathology 3. Timely linked data through National Repository. Linkage to wide range of health and care datasets 4. Easier access to data for stakeholders. Single point of access through a cancer dashboard 5. Enhanced intelligence. Increased analytical team providing support for service delivery, research and innovation. The SCRIS service enables : 1. Unlocking access to the rich data sources currently collected across NHS Scotland a) Incorporating additional data sources not currently available for national analysis. b) Easier access to timely linked data through a national repository c) Data currently received and used by the Cancer Registry (e.g. Pathology data) becomes accessible to other analysts and researchers 2. Reduce the lag time for availability of Cancer Incidence by 50% 3. Exploiting the data to produce meaningful intelligence for Cancer Service Planning, benchmarking, Enhanced Research and Innovation opportunities. 4. Link into the outputs of the IHDP led Information Governance Work stream. Future proofed solution will allow linkage to other data sets in the future and take on board emerging developments e.g. NLP, big data and open data as wider strategies are implemented. Our plan has a timeline of 24 months with the project commencing in April 2017

Cancer Data Platform From Filing Cabinets to Data Virtualisation Upper section is the analytics and visualisation capabilities Middle is virtualisation layer Lower section relates to data sources

Come and visit us in the exhibition hall IHDP stand 61 NSS stand 74 Scottish Cancer Registry and Intelligence Service (SCRIS) Come and visit us in the exhibition hall IHDP stand 61 NSS stand 74 isdscotland.org/SCRIS/  NSS.SCRIS@nhs.net