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Cancer registration as good as the world's best

Posted by: , Posted on: - Categories: Chief Knowledge Officer, Reducing preventable deaths

Computer dataToday PHE released the most accurate national one-year cancer survival figures ever achieved for five cancer sites on cases diagnosed in 2012.  This is a historic milestone and marks one of the greatest achievements so far of the new National Cancer Registration Service in England.

Over the last five years, one-year survival from cancer has been used internationally to compare the quality of cancer care between different countries.  As so often, international comparisons are fraught with difficulties particularly with such a sensitive indicator as one-year cancer survival; collecting and matching data from healthcare systems that are very different is difficult and the way we define important values in each country, such as the date of diagnosis, can make very big differences to the final answer.

When calculating cancer survival one of the most important data items is how far the cancer has spread at diagnosis, the so-called “stage” of the cancer.  Early-stage cancers (stages 1 or 2) have hardly spread at all and patients usually do very well, while late-stage cancers (stage 4) have often metastasized well beyond the original cancer site to the liver, lungs, bone or brain - the outlook for these patients is less good.  Clearly, to improve the survival of patients diagnosed with cancer we need to make sure that whenever possible we catch cancer cases early – that is why PHE is so committed to the national cancer screening programmes and projects such as the Be Clear on Cancer campaign that is part of the National Awareness and Early Diagnosis Initiative.  Recording accurate high-quality staging data on each case is fundamental to the analyses we do on cancer survival and outcome.

Nevertheless, collecting accurate, consistent and timely staging data on every case of cancer across England is no easy feat.  There are professionally agreed ways to calculate cancer stage and these differ for each cancer site.  These methods often require the combination of several different pieces of information each of which may be derived from a different source including clinical assessment, histopathology of the tumour and radiological imaging of the patient.  Even when clinical teams bring all this information together at their multidisciplinary team meetings they may not have all the information available so the final stage may only be assigned later and written in the medical notes.  The challenge for the teams in the National Cancer Registration Service is to find all this data from across the NHS and ensure that it is consistent and comparable before it is included as part of the national cancer registration data.

Five years ago the cancer registries in England were eight separate organisations each collecting data in different ways on different computer systems; in some places staging information was only collected on 15% of cases.  Over the last five years we have modernised the registries to become a single national team, secured new data feeds from local providers, standardised the way we work and trained a cohort of our staff to be our own experts in cancer staging.  We have built partnerships with every acute provider across the country and we work with each individual multidisciplinary team to improve the supply of the key data items we need on each tumour.

Today, as the new National Cancer Registration Service in PHE, we collect staging data on all cancer sites and have accurate staging information on more than 80% of cases of the most common cancers diagnosed in 2012.  This might still sound like a shortfall, but it is never possible to get to 100% as not all cases of a cancer can be staged. This level of completeness for the whole population is outstanding. Of course, we also need to wait a year from the date of diagnosis before we can calculate one-year survival, which on this group of patients was early in 2014.

To be able to report one year cancer survival by cancer stage for the whole of England within 6 months is an achievement that is as good as the best anywhere in the world and is on scale that is unmatched elsewhere.  It puts England in the Premier League of cancer registration services and has only been possible because of the dedication and commitment of all the staff in the National Cancer Registration Service.

Featured image via NHS Image Library. Used under Crown Copyright.

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