National Cancer Patient Experience survey: We need to talk!

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Published: 23 Nov 2016
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Richard Stephens - Consumer Lead and Chair of Consumer Forum, NCRI, UK

Richard Stephens speaks with ecancertv at NCRI 2016 about the National Cancer Patient Experience survey, and the questions and answers regarding the patient experience of cancer research in roughly 70,000 patients.

The results show that there is an inequality of access to research opportunities for cancer patients.

The National Cancer Patient Experience survey has been run every year since 2012 and it is a survey of the experience of cancer patients. So it goes out to over 100,000 patients every year who have received treatment in a four month period; it changes from year to year which four months. It’s usually answered by over 60% so in this particular year, 2015, the last survey that has been published, it was answered by 71,000 patients. It’s fifty-odd questions, not every patient answers every question but on the whole you’re looking at roughly 70,000 people who have answered a survey so their answers carry an awful lot of weight.

One of the questions in the survey is actually the penultimate question and it’s really simple: while you were having your treatment did anyone discuss research with you? The paper we’re showing and presenting at this conference is one that shows year on year since 2012 the proportion of patients who say, ‘Yes, someone talked to me about research,’ is reducing and at a cancer research conference that has to cause worry. Even more worrying, it’s not reducing gradually and slowly, it has come down from 33% saying, ‘Yes, someone has spoken to me about research,’ in 2012 down to 28% in 2015. It’s one percentage point a year and, given that the number of patients answering that question is varying somewhere each year between about 65,000 and 68,000 people, then the percentages show that it is a fewer number of patients who are having conversations about research.

That’s the basis of our paper, however that’s simply a finding, the real issue, of course, is to find out why. What we have found so far, looking at the figures, is that there’s no particular one cause. There is a general tendency, it would seem, for patients simply not to have conversations about research. It’s not just clinical trials, the phrasing in the question is research, so it means patients aren’t recalling discussions about tissue donation or about the importance of data or about joining quality of life or cohort studies. They’re just not having these discussions. The initial figures also suggest that what may be happening is that the drop is actually in district general hospitals rather than the main teaching hospitals. Whilst that might be expected in some circumstances, especially as cancer trials, cancer studies, cancer research generally, clinical research is becoming more and more specialised so you might expect that, nevertheless, that may be leading towards a suggestion that we have a two tier health service. That in itself then becomes even more important when you think that some of the other figures in the survey in previous years have shown that patients who have a discussion about research actually report higher levels of satisfaction with their care pathway. Patients who participate in research report higher levels of satisfaction even further in their care. So actually research appears to improve patient satisfaction, even if it’s just having a conversation about it. We also, of course, know that patients who get treated in research rich hospitals are more likely to have better outcomes. So if district generals aren’t talking about research that may be lowering patient satisfaction and if it also means they’re not doing research that may, in the long run, start changing outcomes for patients. That’s what really worries us.

How can we improve research processes?

There are various things that can be done but some of them, one must recognise, are theoretical only. If you go to any individual hospital in this country and say, ‘Do you have more time for research?’ the answer is almost always no because they feel they don’t have more time for anything and even if they had time they don’t have funds. So there is a perception problem in the NHS that it really is under strain and it can’t deliver any more. In some places that perception is a reality, there’s no doubt about it. Some hospitals, of course, are doing lots of research, it just might not be in cancer. If we have a system that pays hospitals based on the number of patients they recruit to research studies, to active trials, then you may end up with a situation where they just look for big number trials. The disease doesn’t matter, it’s the numbers and can they do it. District generals may well look at trials that are reasonably easy to run and don’t require people to send people off to other hospitals or other trusts to actually have scans or particularly complex technical treatments. It’s a big problem in that sense.

But there’s a further challenge that we have to face – patients themselves don’t appear to be initiating conversations. So the NIHR has a clinical research network to recruit people to trials and the number of patients being recruited to clinical trials in England is still very high, it’s over 600,000 a year.

One of the arguments at a conference like this is always about what are the research priorities and that’s one side of the argument. The other side of the argument about clinical research is about getting patients to participate in it. So we have in the NIHR, the National Institute of Health Research, there is the clinical research network recruiting patients to clinical trials. Payment is by results so we have a system which encourages patients across the NHS to participate in trials or at least encourages hospitals to recruit them. Which is fine and the recruitment remains very good, not necessarily in cancer. The challenge that we’ve tried to address over the past few years is to turn that equation on its head and actually get the patients to ask about research. So there is a campaign every year called OK to Ask which the NIHR runs to encourage patients to ask about research. That’s actually based on our slogan, the NCRI Consumer Forum, that we came up with for our very first [?? 6:36] poster which simply said, ‘It’s OK to approach cancer patients about research, they are open to having the conversation.’ So we know they’re OK to be asked, getting them to ask is another step and that’s something that worries me about this statistic. The fact that it’s dropping every year, we’ve always assumed that actually it’s about clinicians having the conversations with the patients but the question is actually about did anyone discuss research with you. So it begs the question are patients and researchers actually asking about research? Are charities and the support groups that they go to promoting research enough? Are we actually a research aware nation or, as Michael Gove says, have we just all had enough of experts? So this raises some really big issues about the links between research and health and the NHS and cancer patients. The fact that the survey itself has the research question as the penultimate question, long after all the questions have been asked about treatment options, suggests that even the survey says that research is a bolt-on extra. For most of us, the patients and carers in the NCRI, research is not a bolt-on extra, research is part of treatment, it’s part of patient choice.