POTENTIAL OF CANCER REGISTRATION DATA FOR RESEARCH/AUDIT Thursday 3 September 2009

Time is of the Essence

Ireland 2008 – Size of Datasets Cancer Registries 29,000 Cancer Cases 11,000 Cancer Deaths 94,000 Living with Cancer ( ) excluding Non-Melanoma Skin Cancer 450,000 Cases to date

 Patient – Demographic Details/Comorbidity  Disease  Services Used, eg diagnostics  Screening histories  Geography of Disease  Treatment  Survival  Quality of Life Range of Data Items

Expect the Unexpected The Patient - Communication Referral to dieticians, especially GUT cancers Note that discussion with patient Information re diagnosis/prognosis in GP letter Speed GP communication with MDT management systems Psycho-social referrals

PSA Tests on Population Level* Barrett’s Oesophagus* Colorectal Polyp Register Service Pathways* *All Ireland Unique Datasets Risk Assessment

NCI Cancer Prevention Fellowships NCI Cancer Prevention Summer School Barrett’s Consortium International Assn Research Cancer European Network Cancer Registries International Linkages

 Biobanks  Census – N.I. Longitudinal Study  GP Research Database  Cancer Waits/MDTS  N I TELLUS Study Potential For Linkage Other Datasets

Tellus Study (Arsenic Levels)

Changing Cancer Services - New Clinical Data Sources

CaPPs: Patient Pathway View

CaPPS MDM Screen: Staging Work Up

CaPPS: Treatment screen

CaPPS: Clinical Nurse Specialist/AHP

CaPPS: Follow up screen

Surveillance of Early Disease Modelling Future Trends Economics of Cancer Patient Experience Service Quality Improved Services for Patients Research Areas

N. Ireland Cancer Mulhouse Building Grosvenor Road Belfast BT12 6BJ Tel Fax Web National Cancer Registry Ireland Building 6800 Cork Airport Business Park Kinsale Road Cork Ireland Tel Fax Web

CaPPS: Monitoring Cancer Targets