1. The National Cancer Intelligence Network An overview Professor David Forman Professor of Cancer Epidemiology, University of Leeds NCIN – Lead for Information & Analysis

2. “Quite simply, we want to have the best cancer information service in the world by 2012” Mike Richards Britain against Cancer Dec 2007

3. 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 2008www.ncin.org.uk/eatlas First reports on UK incidence & mortality, survival, incidence & deprivation and prevalence

4. NCIN – New outputs

5. National Cancer e-Atlas www.ncin.org.uk/eatlas

6. 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

7. 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

8. 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

9. 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

10. 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

12. 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?

13. 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”

14. Looking Forwards: Cross cutting analyses Prevalence: Current and projected Ethnicity International comparisons Health economics Outpatient and GP attendances Rare cancers

15. “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

16. NCIN Partnership