1. Northern & Yorkshire Cancer Registry & Information Service NHS UKACR Conference 30 September 2004 1 How useful is the Cancer Waiting Times (CWT) dataset for the purposes of cancer registration? - a data quality and evaluation exercise at NYCRIS. Caroline Brook Information Services Manager, NYCRIS

2. Northern & Yorkshire Cancer Registry & Information Service NHS UKACR Conference 30 September 2004 2 Introduction CWT dataset defined in 2002 for monitoring waiting times (against targets identified in the NHS Cancer Plan). DSCN 22/2002 mandated data collection by Trusts. National guidance on data collection and data definitions. Data held nationally on a central database. All data items are included in the National Cancer Dataset. April 2004 - replaced the existing paper-based monitoring arrangements (QMCW).

3. Northern & Yorkshire Cancer Registry & Information Service NHS UKACR Conference 30 September 2004 3 What does the CWT dataset contain? All urgently referred patients with suspected cancer. All confirmed cases of cancer (whether urgently referred or not). Extended to cover all sites of cancer from September 2003. What it does not contain… “All sites of cancer” for CWT does not equal “All registerable conditions” for cancer registries. Patients who die prior to receiving treatment. Private patients. Patients who do not have an NHS number.

4. Northern & Yorkshire Cancer Registry & Information Service NHS UKACR Conference 30 September 2004 4 The work at NYCRIS Project to examine how this source of data could be used for purposes of cancer registration. Identified one pilot Acute Trust from each of four cancer networks (3 cancer units and 1 cancer centre). Data were obtained directly from each Trust (as central feed from the CWT database to registries was not yet established). Objectives were to evaluate usefulness for cancer registration and to provide feedback to Trusts on data quality and ascertainment.

5. Northern & Yorkshire Cancer Registry & Information Service NHS UKACR Conference 30 September 2004 5 Method Trusts extracted confirmed cases of cancer with one or more of 3 specified dates between 01/01/04 and 31/03/04. 1738 records in total. (31% via the urgent referral route.) NYCRIS notifications had been processed for this period. All records were matched using NYCRIS patient matching utility against the whole of the registration database. Records matching at patient level were then matched at tumour level using 3-digit ICD-10 codes. NYCRIS also identified a cohort of relevant cases from its registration database in order to identify any cases potentially missing from the CWT extracts.

6. Northern & Yorkshire Cancer Registry & Information Service NHS UKACR Conference 30 September 2004 6 Results - patient matching 1562 records matched at patient level against the whole of of the NYCRIS database. a 90% electronic patient match rate. 167 were manually reviewed resulting in a further 48 patient matches. Reasons for non-matches electronically were largely due to incorrectly typed patient demographics, or registrations made since matching taken place. 119 of the non-matched patients were identified as potential new registrations. These included cases with previously missed pathology, clinical diagnoses and advanced disease.

7. Northern & Yorkshire Cancer Registry & Information Service NHS UKACR Conference 30 September 2004 7 Results - tumour matching 1283 records matched on tumour (out of a possible 1570) (3 digit ICD-10, either outside or within the identified cohort). an 82% electronic tumour match rate. 140 of the unmatched tumours have been manually reviewed resulting in 132 being matched. This can be due to recording of secondary sites by NYCRIS prior to full investigation, but largely due to differences in recording of in-situ cases (bladder, breast, skin). 7 of the unmatched tumours reviewed resulted in possible new registrations.

8. Northern & Yorkshire Cancer Registry & Information Service NHS UKACR Conference 30 September 2004 8 Results - NYCRIS cohort 550 cases identified by NYCRIS as highly likely to have been included in the CWT extracts were not matched. (CWT sites only, pathology confirmed cases only, death notifications excluded, etc.). 85 of these have been reviewed manually by one of the participating Trusts. – 55 have been identified on the Trust database but not yet uploaded on the CWT database, 11 were private patients. – The Trust had no record of 8 of the patients and the remaining 11 were queried by them with regard to site or diagnosis date.

9. Northern & Yorkshire Cancer Registry & Information Service NHS UKACR Conference 30 September 2004 9 Advantages for cancer registration Earlier notification of clinically diagnosed cases. Identifies any cases where pathology reports gone missing. Provision of additional data items to add to existing notifications, i.e. postcode (98%), NHS number (100%), known registered PCT (93%), details of first treatment (provider, treatment type, treatment date) (99%). May provide a more specific site to previously registered secondaries. This leads to more complete provisional registrations and faster case ascertainment.

10. Northern & Yorkshire Cancer Registry & Information Service NHS UKACR Conference 30 September 2004 10 Limitations for cancer registration CWT data only cover 71% of all registerable conditions. Patient not included if dies prior to treatment or treated privately. Only 3 digit ICD-10 site code and no morphology code, therefore more difficult to carry-out precise tumour matching. Patients excluded who have no NHS number, therefore low ascertainment for patients on Scottish border. Could lead to over-registration of malignant sites if not matched with pathology. First treatment date for surgery = date of admission.

11. Northern & Yorkshire Cancer Registry & Information Service NHS UKACR Conference 30 September 2004 11 Lessons learned For Trusts Duplicate CWT entries identified where patients are referred to one provider and treated at another. Missing cases identified by registry - helps to inform process for picking up non-urgently referred cases. Need to improve identification of in-situs. For NYCRIS Inaccurate data-entry of demographics reducing patient-matching. Some inadequacies in current pathology notification processes. A CWT record can provide sufficient information to make an initial notification (but not a provisional registration).

12. Northern & Yorkshire Cancer Registry & Information Service NHS UKACR Conference 30 September 2004 12 Conclusion CWT dataset is a useful early source of initial notification for cancer registries but does not cover all required cases. Additional data items could be obtained early in the process. When combined with other notifications, i.e. pathology, it can make a more complete provisional registration. Registries need to work with Trusts to improve their coding and ascertainment of cases to make it even more reliable. Consideration given to which date(s) to use for extract and a rolling programme established to ensure no missed cases.