1. Completeness of linking identifiers Combining database structures South West Public Health Observatory www.swpho.nhs.uk Development of a urological cancer observatory Sean McPhail 1*, Paul Eves 1, Brian Cottier 2, David Gillatt 3, and Julia Verne 1 1: South West Public Health Observatory, *sean.mcphail@swpho.nhs.uk 2: The National Cancer Services Analysis Team, Clatterbridge Centre for Oncology, Wirral 3: David Gillatt, Consultant Urologist – Southmead Hospital, and Chair of the BAUS Section of Oncology Background The nature of urological cancer and its treatment is rapidly changing. In particular the incidence of prostate cancer (the most common male cancer and second biggest cause of male cancer death) is increasing rapidly 1. This is largely an artefact due to higher demand for the PSA blood test 2 driven by social and political factors. New technologies and treatments for these previously undiscovered cancers are also being widely employed. The aim of this project is to increase the understanding of these emerging trends in urological cancer care. This is vital to guarantee a high and equitable standard of service to patients. Conclusions References (1)Office of national statistics, MB1 data series nos. 28-34, www.statistics.gov.uk/ (2) “Rising incidence of prostate cancer in Scotland: increased risk or increased detection?”, Brewster, D., et al., BJU International, 85:463-472 (2000) New information from old databases Completeness Date of diagnosis Date of death Procedures Burden on service Details of treatment Diagnostic detail Survival analysis by treatment Completeness Date of diagnosis Date of death Procedures Burden on service Details of treatment Diagnostic detail Patient journey from diagnosis onward 1NHSno1 1 2Postcode2 2 3DoB3 3 4Tumour4Trust4Tumour 5Death date5Procedure5Pathology RegistryHESBAUS Example of data linking Step 1 “Common language” Step 2 “Resolve disagreements” Registry HES BAUS Many new analyses become possible by combining data that is present in different databases. Comparing data present in more than one of the databases allows data quality checking. Linking identifiers are present in a sufficient fraction of records to allow useful analysis to be done. Names and addresses are not recorded. Combining the three databases is done in two stages, firstly the different data formats are translated into a common language. Secondly, differences in the data are resolved by giving data from different sources priority on a field-by-field basis. Combining existing databases can make data we’ve already collected work harder. New analyses are immediately possible. Detailed data quality cross-checking between databases is possible. Technical problems come mostly from difficulties in translating context and structure of data. There is a trade-off between privacy and utility… but in this case it’s worth it. New Prostate cancer cases in SW region by Gleason score 7 6 Not known 8 5 9 0 1000 2000 3000 4000 5000 6000 1995199619971998199920002001200220032004 Combination of staging data from BAUS and the South West Cancer Intelligence Service shows a distinct reduction in in prostate cancer diagnoses with a Gleason score below 6 since the year 2000. 0% 20% 40% 60% 80% 100% 19971998199920002001200220032004 Registry BAUS HES