The National Cancer Intelligence Network

An overview

Professor David FormanProfessor 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-Atlaswww.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

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

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

• Lung – Thames• Breast – WMCIU• Colorectal – NYCRIS• Urology – SWCIS• CNS – ECRIC• Gynaecology – Trent• Head &Neck – Oxford

• 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

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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?

• Extended linkage: – Genetic data – Primary care data– Outpatient, Radiotherapy, Chemotherapy– Biobanks

• Population-based QoL and Survivorship• Research data repositories

– NCRI Informatics Initiative– caBIG

“The best cancer information system in the world”

Looking Forwards:Cross cutting analyses

• 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 C I U

OXFORD CANCER INTELLIGENCE UNIT