CANCER CARE
being rolled out of the Eastern Cancer Reg- istration and Information Centre, based at Cambridge.”
The NCIN has a dual role in both defi ning what data should be collected and how, and actually manipulating and using that infor- mation to improve clinical practice and pa- tient outcomes.
Mr Carrigan said: “The NCIN was set up to for one basic reason: in this country we’ve had cancer registration, counting every in- dividual cancer in the country, for 20 or 30 years.
“That data was used to do your basic in- cidence rates and numbers, the mortality and survival rates. But it was a hugely un- der-utilised resource; the fact that you’ve got a record of everybody in the country who had been diagnosed with cancer, done with a robust methodological approach, so you could compare like with like. It was a solid baseline – many of the big countries in the world don’t have full population- based registration – but it wasn’t exploited. This data was sat there in a big data bucket, in a big machine room, and was just used to count numbers of cases.
“So, we were set up to take advantage of that data. Working with the eight cancer registries, we decided to investigate link- ing the registry data with every other bit of data we’ve got on cancer patients in the NHS. That would let us do a whole range of things. We linked the registry data with in-patient and out-patient data from HES, which would let you link defi ned new cas- es of cancer to diagnostic and treatment events.
“It’s the diagnosis that’s the key; with any other disease, you can maybe look in HES and fi nd when somebody has had a diabe- tes episode, but you can’t see an initial di- agnostic point. Uniquely, you can do that with cancer because of the registries.
“By linking those things together you can look at the ‘footprints of care’ in the run- up to cancer and the post-diagnosis phase. You can compare across the country the different sorts of treatment people have had for different tumours, different age profi les and different ethnicities. It allows you to inter-cut the data in whole new ways.
“If you look at the run-up in the pre-
diagnostic phase by linking in things like cancer waiting times data, screening data and GP data, you’re able to look at what happens to patients before they get diagnosed. Where does a diagnostic trigger happen? Is it screening, turning up at their GP with a lump, incidental fi ndings through an A&E admission? We’ve been able to do that for the fi rst time, and there’s no other major country in the world that’s ever done that on such a scale.
“So, this gives us the ability to look at every- thing up to the point of diagnosis and begin to try and understand more about the 23% of patients who are fi rst diagnosed through A&E.”
That research had a direct impact on Gov- ernment policy and clinical practice, Mr Carrigan explained: “Our routes-to-diag- nosis work mapped every newly-diagnosed cancer patient and backtracked through their health records to fi nd whereabouts in the system their diagnosis came from.
“But what we found was more than 20% of people were fi rst diagnosed with cancer at A&E. Now, that can’t be right. It might mean GPs are missing things, or that
national health executive May/Jun 11 | 33
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