Cancer Reform Strategy - First Annual Report - Merseyside ...

CHAPTER 6: REDUCINg CANCER INEQUAlITIES43Ethnicity6.9 The eight Cancer Registries in Englandhave worked with the National CancerServices Analysis Team and the Public Healthobservatories to examine, evaluate and exploitthe use of patient-level coded ethnicity data,which is held in the Hospital Episodes Statistics(HES) data held by the NHS Information Centre.6.10 The National Cancer Intelligence Network(NCIN) funded the development work toundertake national-level data linkage, to linkcancer registry and HES data for the latest tenyears of data (up to 2005). The resulting workhas been fed back to all the eight regionalCancer Registries, which are uploading theethnicity data into their data systems.6.11 Through the NCIN, routine access toall prospectively recorded ethnicity data will beavailable to all eight Cancer Registries, to ensurethat where ethnicity data is recorded in hospitals,this data is electronically routed to the registries,through the HES dataset.6.12 The Thames Cancer Registry has doneseveral studies of cancer incidence, care andoutcomes in relation to ethnicity and reportsfrom the studies are due to be published in2009. The studies focus particularly on breastand prostate cancer and will help to show theincidence and survival rates in different BMEgroups, mainly Black and Asian people. Ingeneral terms, the studies show that in SouthEast England:• Asian and black women have a lowerincidence of breast cancer than white women• young women have more similar rates thanolder women (suggesting a migration effectwith convergence towards the local rate)• black women have significantly worse survivalthan white women (this is attributable todeprivation and stage differences)• prostate cancer incidence is generallyconsistent with international patterns ofvariation• black men have rates twice those in whitemen while Asian men have lower rates• survival is similar in white and black men, andAsian men have higher survival.6.13 The National Cancer Action Team (NCAT)working with Cancer Black Care and other BMEcancer charities are developing a National BMECancer Patient Advisory Panel. The panel willprovide BME cancer patients and their carerswith an opportunity to voice their experiencesof cancer services across England in a facilitativeway. It will also provide a space for feedbackfrom BME patients and carers, to be used byservice providers to improve the way services areprovided and developed for diverse groups ofcancer patients and carers.6.14 The Panel builds on a BME cancer charitiesmeeting held in January 2008 and addressesthe under-representation of BME patients andcarers in traditional methods and modes ofengagement with the NHS. It will provide anational voice to this group of patients andprovide a much needed vehicle for the NHS toengage with diverse groups of cancer patientsand carers.Clinical trials6.15 In line with a commitment in the CRSto encourage recruitment of older peopleinto clinical trials, a joint project between theNational Cancer Research Network, the Northernand yorkshire Cancer Registry and the NCINhas started to pilot the linkage of clinical trialsdata with Cancer Registry data. This will allowthe monitoring of entry rates into clinical trials(both randomised and observational) to comparethe demographics and tumour characteristicsagainst underlying population based incidence.This work will examine geographic, age, ethnicand socio-economic characteristics of patients intrials, comparing characteristics of trial entrantswith those of non-entrants.