The National Cancer
Intelligence Network
An overview
Professor David Forman
Professor of Cancer Epidemiology, University of Leeds
NCIN – Lead for Information & Analysis
“Quite simply, we want to have the
best cancer information service
in the world by 2012”
Mike Richards
Britain against Cancer
Dec 2007
NCIN early history
• Approved by NCRI Board – June 2006
• Given brief by Cancer Reform Strategy – Dec 2007
• NHS Contract for Acute Services mandates collection of
Cancer Registration Dataset – April 2008
• Coordinating Team and Steering Groups established –
Jan to June 2008
• Launch Conference – June 2008
• Cancer eAtlas: www.ncin.org.uk/eatlas - July 2008
• First reports on UK incidence & mortality, survival,
incidence & deprivation and prevalence
NCIN – New outputs
National Cancer e-Atlas
www.ncin.org.uk/eatlas
NCIN Core Objectives
1. Promoting efficient and effective data collection
throughout the cancer journey
2. Providing a common national repository for cancer
datasets
3. Producing expert analyses, based on robust
methodologies, to monitor patterns of cancer care
4. Exploiting information to drive improvements in
standards of cancer care and clinical outcomes
5. Enabling use of cancer information to support audit and
research programmes
National Cancer Data
Repository
Registry-HES linkage: 1995-2004 (England)
• 8.5 million tumour records from Registries
– c. 30 fields of data
• 34 million hospital in patient episodes
– c. 150 fields of data
• Enables novel analytical approaches
– ethnicity, comorbidity, surgery, bed-stay
– non-cancer outcomes, hospital “footprints”
– end of life resource use
• Developments in progress with Scotland, Wales,
Northern Ireland
National Cancer Data
Repository
Potential linkages
• Outpatient HES
• Cancer Waits (recurrence)
• General Practice Research Database
• Clinical trials
• National cancer screening databases
• Radiotherapy/chemotherapy national datasets
• Multi-disciplinary team datasets (stage and comorbidity)
• Genetic/biobank and other research datasets
• PCT cancer budget
• Peer review
Cancer registry lead areas
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Lung – Thames
Breast – WMCIU
Colorectal – NYCRIS
Urology – SWCIS
CNS – ECRIC
Gynaecology – Trent
Head &Neck – Oxford
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Skin – SWCIS
Upper GI – Thames
Sarcoma – WMCIU
Haematology –
NYCRIS
• Children – CCRG
• Teenage & Young
Adult – NWCIS
NCIN - next 12 months
• Clinical Reference Groups established for all major sites
• Scientific Advisory Groups established
• Evaluation of the potential for follow-up of patients in clinical trials
(NCRN)
• Exploitation of repository for research benefit (NCRI)
• Cancer incidence and survival in relation to ethnicity (in
collaboration with CRUK and Thames CR)
• Cancer care patterns among teenagers and young adults (in
collaboration with CRUK and NWCIS)
• International bench marking study (NAEDI)
• Cancer site-specific patterns of care and impact on outcomes e.g.
post operative mortality (lead cancer registries)
• Identification of treatment centres with good practice & poor
performance
60
50
40
Risk-adjusted APE rate
30
20
10
0
100
200
300
400
Number of surgically treated rectal cancer patients
500
NCRN (Trials) Linkage
• Monitoring entry rates into clinical trials
– comparing characteristics against population based incidence
– Examining geographic, ethnic and socio-economic characteristics
of patients in trials
– comparing characteristics of trial entrants with non-entrants
• Potential for following up trials patients over long periods
• Assessing the quality, reliability and reproducibility of data
available in the NHS datasets as compared with data
collected in clinical trials
• NCIN data for follow-up (e.g.)
– Can subsets of patients with more intensive follow-up inform
interpretation of whole trial population datasets?
“The best cancer information
system in the world”
• Extended linkage:
– Genetic data
– Primary care data
– Outpatient, Radiotherapy, Chemotherapy
– Biobanks
• Population-based QoL and Survivorship
• Research data repositories
– NCRI Informatics Initiative
– caBIG
Looking Forwards:
Cross cutting analyses
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Prevalence: Current and projected
Ethnicity
International comparisons
Health economics
Outpatient and GP attendances
Rare cancers
“The best cancer information
system in the world”
• Quantum improvements in data collection
• Exploit potential of NHS and research data
linkages
• Transformation of cancer information landscape
– Better availability and presentation of national data for
professionals, patients and public
– New linked datasets as aides to research
– Clinical care and outcomes properly monitored for
service improvement and patient benefit
NCIN Partnership
O
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OXFORD CANCER
INTELLIGENCE UNIT