CANCER CARE
people aren’t presenting early enough, or that the health service is letting them down, or in some cases the data might be wrong. But what we’re able to do now is to find out why that figure is so high. What’s so special about those patients who turn up ‘late’?
“That research and that figure directly affected government policy and went into the new Cancer Strategy published in January.”
But data, used in the right way, can also offer guidance when examining more ab- stract issues, like the ‘patient experience’ after a diagnosis.
Mr Carrigan said: “We can use that to look into what ‘happens next’ – at equity of care; at people getting access to the right service and service specialisation; and things like patient-reported outcomes and the patient experience. On the back of all that, once you’ve got all that data together, in the Na- tional Cancer Data Repository, the oppor- tunity to use that information for research is just huge.
“That’s partly the reason why we sit within the National Cancer Research Institute, the NCRI, as our umbrella organisation: to drive new research projects. There’s 20 or 30 of those projects linking the GPRD (General Practice Research Database) with our data to generate new insights into why things are different, and what the differenc- es are in terms of experience and outcomes in care.”
NCIN research also made waves in April when its joint project with the University of Leeds and Cancer Research UK showed wide variances in bowel cancer post-oper- ative mortality at different NHS hospitals.
Mr Carrigan told NHE: “The methodol- ogy was very complex and was funded by Cancer Research UK. We ran it through a peer-review research process, which is why it took a while, but as soon as the research process had been gone through and the peer-review publication had accepted the methodology, we were able to re-cut more recent data using that same methodology.
“That meant that when the publication came out, it showed that from 2003-2006 there were some trusts which were statisti- cal outliers. But on the same day we pub- lished more recent data showing that the variance had actually gone away at those trusts; a reassuring message for patients.
“That was a neat link-up between research- based evidence, involving new ways of looking at data and interpreting it, and a
34 | national health executive May/Jun 11
rapid turnaround of the data that we can do to accompany the research.
“That research had a direct impact on clini- cal care at hospital trusts.”
With such complex data analysis and sta- tistical comparisons to be done, does NCIN have outstanding in-house IT capability, or has it joined the rest of the NHS in bringing in major contractors?
“It’s a mix,” Mr Carrigan advised. “Most of our work will use fairly standard tools with the back-end of data manipulation man- aged in-house. We do have a relationship with a couple of commercial providers to do some bespoke software, as the com- plexities around calculations for survival by age group, by tumour site, by demographic area, and so on, require complex manipula- tion. We’ve got some statistical tools we’ve developed with suppliers to do that, but more often than not we actually release our data in a much more user-accessible for- mat, so we’re trying to move more towards putting data on spreadsheets, for example.
“The profiles we published last year for GP practices, so they can see their entire cancer profile, from numbers of patients in their practice who are diagnosed with cancer, how they are rated against the PCT average in terms of two-week wait referrals, access to screening and so on, those were all done as PDFs and Excel spreadsheets, as they are such simple and accessible mechanisms. So it’s a mix; the highly statistical data needs specialist statistical tools, but the basic presentation can be done on the web, on spreadsheets, on Powerpoint in some cases and even on paper as well.”
With information presented in simpler and more accessible formats, would Mr Car- rigan be happy with patients making de- cisions about their own care based on the data published by NCIN?
He said: “It’s an interesting question. We say the data we produce is to be used by health professionals and patients, but ac- tually getting the right information to pa- tients is something I don’t think the NHS as a whole has done that well so far, and I would include us in that.
“But the significant thing we can do is to work with the cancer charities, especially Macmillan Cancer Support and Cancer Re- search UK, to look at how they approach their patients.
“When a patient gets diagnosed with can- cer, they generally don’t go to a government website, they go to Macmillan Cancer Sup- port and Cancer Research UK, as the big- gest two cancer charities.
“People trust them, because they are very focused on how information needs to be presented to people and families, so we work very closely with them to investigate the best way of using our data and explain- ing it to people in a way that’s useful to them; not scaremongering, not frightening them off treatment that they should have, but done in a responsible way.
“It’s a neat balance that we’ve got between just having the data out there and produc- ing numbers and graphs and stats and flow charts, to working with the charities to pro- duce information which people find useful.
“I have to say it’s a really big challenge. We’re nowhere near getting it right yet though, because the information coming out really does re- quire quite complex interpretation.”
Chris Carrigan
FOR MORE INFORMATION Visit
www.ncin.org.uk
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