National cancer patient survey raises more questions about patient access to research

The results of the National Cancer Patient Experience (NCPE) 2015 survey were published this morning.  It’s an important insight into what people with cancer around the UK think about their care and treatment.

For the last three years – and thanks to the tenacity of colleagues on the National Cancer Research Institute Consumers Liaison Group (NCRI CLG) – the survey has asked people about research.  In fact, it’s the only survey of its type to do so.

Unfortunately some pruning of the survey meant patients were asked only one question about research this time around: Since your diagnosis has anyone discussed with you whether you would like to take part in cancer research? 

In response, 28% of patients said they had a discussion about research. This means that the downward trend of recent years has accelerated somewhat.  The equivalent results for 2012, 2013 and 2014 are: 33%, 32% and 31%.  In Scotland the figure for this year is even less at 22%.  No doubt there is a great deal of variety across tumour type and locality. The number of ‘no, buts’ in response to the question also seems to contradict every other bit of evidence I have seen about people’s willingness to participate in research.

Last year when I wrote about the survey and voiced some concern about the inertia in the figures I was told by some cancer doctors that it is not a reasonable aspiration to expect every cancer patient to have a discussion about research.  I have not really had a good explanation why.  I wonder if they would agree with me now that this latest set of results merits further investigation.

Yes, the UK remains a world-class recruiter to cancer research. But for how long? The NCPE results suggest we are not fulfilling the right of patients under the NHS Constitution to information about ‘relevant and appropriate’ studies; that the NHS is missing opportunities to advance and promote research as it is duty-bound to under the Health and Social Care Act 2012 and; that NHS England needs to be shaken out of its general bemusement and inertia about the role of health research in improving the service.

I suspect even the Marie Celeste had full sails before eventually being becalmed.




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