Cancer Outcomes Conference 2015

National cancer conferences all take on a character of their own. If organised by one of the charities that charity’s agenda naturally takes centre stage, along with its chosen names. There are two conferences organised by national bodies – the NCRI Cancer Research Conference in November and the NCIN Cancer Outcomes Conference in June.

The NCRI Conference is, quite naturally, about research. Its agenda is developed over a year ahead so that international names can be booked while their diaries are clear. Themes are decided on and it takes a major shift in science (which doesn’t happen often) for things to change at short notice. It attracts about 1500 delegates, mostly scientists, a few cancer clinicians, a group of interested patients, and science managers from all over the place.

By contrast the NCIN Cancer Outcomes Conference is, nominally, about NHS data and how we use it. That’s a rapidly changing world and the agenda develops and shapes over the months, finally settling down a few weeks before the event. It attracts a wide variety of people including clinicians and researchers with an interest in how data is gathered and used, a group of interested patients, and of course lots of those who gather, manage and analyse data. About 500 people come.

It sounds rather dry and geeky. On the surface of it the Cancer Outcomes title doesn’t help a lot either, implying death on the one hand and survival on the others – a bit black and white. There is nothing monochrome here though.

NCIN is one of the great achievements from the reign of Professor Sir Mike Richards as National Cancer Director (there were many others too). Eight years ago the NHS gathered enormous amounts of data about cancer and did very little with it. One of the problems was that no single bit of it joined to any other bit and it took huge amounts of effort (and cost) to explore and match different datasets to get even quite simple analyses completed.

The Cancer Reform Strategy at the end of 2007 set out the plans to change this situation and the National Cancer Intelligence Network was formed, initially reporting to NCRI. There were many barrier to overcome. Cancer registry coding of tumour types had to be standardised across eight registries in England. Before cancer registry data could be mapped against Hospital Episode Statistics (known as HES) differences in understanding of common terms had to be sorted, additional codes in registration had to be developed to cover information which was needed o complement hospital activity, and one-off data practices in individual hospitals had to be resolved. Getting up to date data was also a problem, at the outset the most recent that could be reported was three to four years out of date when eventually available at all. It was also very quickly noticeable that radiotherapy and chemotherapy datasets just did not exist anywhere.

The NCIN 2015 Conference is probably the first event where we can say that the hard work by a lot of people to sort these problems has created an accessible network ready to answer questions from clinicians, charities and NHS managers. Data is now available in not-quite real-time, its certainly capable of giving very up to date views. It has also stimulated research using datasets not included because NCIN actively supports researchers wanting to push boundaries.

If we need to offer just one example of where NCIN analysis is changing things it is in the understanding of patients diagnosed with cancer following a visit to A&E. We always knew it happened. When it was analysed the shock was the scale of it and the poor survival of patients diagnosed by that route. Over 25% of patients are diagnosed through A&E and 50% do not survive one year. Steps to challenge this situation are underway. We are not yet certain but it increasingly looks as though poor awareness of cancer symptoms is the key reason why our survival statistics are generally so much poorer than many other similar countries.

NCIN 2015 was co-organised with the Northern Ireland Cancer Registry and Queens University Belfast. The programme was breathtakingly broad. Plenary sessions looked at issues in a more strategic way while parallel sessions looked at specific issues in greater detail. Parallel session topics included Prevention, Early Diagnosis, Clinical Practice, Treatment, Childhood and TYA Cancer, Inequalities, Survivorship, Epidemiology, Data Management and the Chemotherapy Dataset. Plenary sessions considered the International Perspective, General Practice and Cancer, Childhood Cancers and the crucial topic, Changing Clinical Practice – the importance of Routine Data and Cancer Registries.

There were some very distinguished speakers. Among them Professor Sir Richard Peto offering an up to date international view of smoking, Sara Hiom from Cancer Research UK, Professor Michel Coleman, Professor Paddy Johnston, and Professor Sir Alex Markham. There were important faces missing, the journey to Belfast proving too daunting for some who should have been there but shall remain nameless.

I had the privilege of co-chairing the Plenary session on General Practice together with Professor Greg Rubin from Durham. Cancer conferences in the past ten years or so have often griped about GPs and their inability to diagnose cancer, while at the same time understanding the reasons why they find it problematic. This session was the first time that General Practice has been given a voice in a major national Cancer Conference so it was long overdue. I felt very encouraged by the presentations which gave an objective view of the key issues and described some of the work going on to understand them better. Professor Willie Hamilton from Exeter, who has been clinical lead for the NICE review of its guidance to GPs about diagnosing cancer, gave some insights into that work which is being published Tuesday 23rd June.

Thanks and congratulations go to the organising groups for the Cancer Outcomes Conference 2015 – NCIN led by its Director, Chris Carrington and QUB led by Dr Anna Gavin.