1. Automated Cancer Registration N.Ireland Experience Colin Fox (IT Manager) Richard Middleton (Data Manager)

2. N.I. Cancer Registry Background Serves 1.6 million population 1959Card Registry 1994New Registry set up 1996Computer System installed 1997Report Incidence 1993-1995 »8500 Malignant Registrations including NMS »7000Non Malignant Conditions

3. Why did we choose this route? Electronic sources available –Patient Administration System (PAS) – Laboratory Systems covering all Histopathology & Cytopathology –Death Certificates available electronically No resources for manual data input Old Registry incomplete

4. Sources used by NICR Histopathology –SNOMED Coded Topography & Morphology Cytopathology (both Gynae. & Non-Gynae.) –SNOMED Coded Topography & Morphology Hospital Discharge (PAS) –ICD9 & ICD10 Death Certificates –ICD9 & ICD10

5. Raw Source Table Automatic Data Load from 13 PAS sites, 5 Pathology labs, Radiology, General Register of Deaths, Minor Sources Registration Database Supplier Data Files NICR Registration Process Validation Modules Revalidate Types of validation include simple (eg. dates), cross (eg. site/sex) & minimum dataset (eg. topography) IARC Checks Fail Automatic Matching Routines Pass Search for duplicates Check of Death Initiated Cases by inspection of GP notes PAS only registrations - inspection of hospital notes QUALITY ASSURANCE Data Extracts Feedback to Data Suppliers (completeness, etc) OUTPUTS: IARC (CI5C, ACCIS, EUROCIM) Reports (Incidence, Mortality,Survival) Queries (Medics, Government)

6. Rules for Updating Patient details –PAS details preference over Pathology Site and Morphology –Pathology details over PAS Date of Diagnosis (almost identical to ENCR) –Date of First Microscopic verification –Date of Test (e.g. XR) leading to diagnosis Method of Diagnosis –As ENCR/ IARC rules Multiple Primary Rules (IARC based) –E.g. NMSkins 1 Basal Cell +1 Squam. Cell

7. Steps to make Electronic Tumour Registration Hospital Discharge C18.4 Date Admission 29.5.2000 Histopathology TSNOMED = T67010 MSNOMED =M81403 Biopsy on 15.6.2000 Histopathology TSNOMED = T67000 MSNOMED = M84803 Biopsy on 22.6.2000 C18.4 Transverse Colon 15.6.2000 Mucinous Adenocarcinoma

8. Records processed per Year (2000) Patient Administration System (13 Hospitals)53,000 episodes (increasing) 5 Laboratories –Histopathology20,700 reports –Cytopathology (Gynae)1,700 –Other Cytopathology1,900 Death Certificates 15,000 deaths –3,500 Cancer Deaths

9. Some Processing Stats >99% notifications received electronically >80% pass validation (most fails relate to lookups eg. GPs, Clinicians) >65% automatically matched - others require manual intervention Category PASPath - New patient/tumour 8%47% - Exist. Patient New tumour 10%26% - Exist. Patient/tumour 82%27%

10. Quality Control Roles of Registry Staff Quality of Information –Histopathology –Cytopathology –Hospital Discharge (PAS) –Death Certificates

11. Data Quality Staff (Tumour Verification Officers) Resolve electronic data on system Examine Hospital and GP notes Extract Staging information from pathology reports Carry out Audit projects

12. Data Manager Train and Supervise Staff Resolve difficult cases Up-date Coding Tables Plan work for staff Liaise with IT and Statistical Staff QA work of staff

13. Types of Information from different Sources

14. Checks Don’t Check –PAS + Path. –PAS + Cyto. Do Check –PAS only –Certain Path only –Death Cert. Initiated –Certain Cyto. + Path. –All Multiples –Certain “Problem” sites (e.g. bladder, bone, pleura, peritoneum, liver)

15. Burden on IT Staff Ensuring suppliers provide data extracts on a timely basis Correcting invalid records –No “Date of Birth”, Site/Sex validation fails –New Topography/Morphology combinations –New Clinicians, GPs Batch Updates Miscellaneous (de-duplication, extracts, etc)

16. Current State 2000 Incidence Data Ready 2001 All data processed through 2002 All pathology reports within one month All PAS detailed at least 6 months behind current date

17. Development Part of User Group Part of ENCR Automated C R Group Software being updated to CACHÉ