Automated Cancer Registration N.Ireland Experience

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Automated Cancer RegistrationN.Ireland Experience

• Colin Fox (IT Manager)
• Richard Middleton (Data Manager)

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N.I. Cancer Registry Background

• Serves 1.6 million population
• 1959 Card Registry
• 1994 New Registry set up
• 1996 Computer System installed
• 1997 Report Incidence 1993-1995
• 8500 Malignant Registrations including NMS
• 7000 Non Malignant Conditions

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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

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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

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NICR Registration Process
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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

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Steps to make Electronic Tumour Registration
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Records processed per Year (2000)

• Patient Administration System (13
  Hospitals) 53,000 episodes (increasing)
• 5 Laboratories
• Histopathology 20,700 reports
• Cytopathology (Gynae) 1,700
• Other Cytopathology 1,900
• Death Certificates 15,000 deaths
• 3,500 Cancer Deaths

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Some Processing Stats

• gt99 notifications received electronically
• gt80 pass validation (most fails relate to
  lookups eg. GPs, Clinicians)
• gt65 automatically matched - others require
  manual intervention
• Category PAS Path
• - New patient/tumour 8 47
• - Exist. Patient New tumour 10 26
• - Exist. Patient/tumour 82 27

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Quality Control

• Roles of Registry Staff
• Quality of Information
• Histopathology
• Cytopathology
• Hospital Discharge (PAS)
• Death Certificates

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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

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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

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Types of Information from different Sources
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Checks

• Dont 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)

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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)

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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

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Development

• Part of User Group
• Part of ENCR Automated C R Group
• Software being updated to CACHÉ