Today sees the annual Cancer Patient Experience Survey published.
For the third year running it looks at the extent to which people with cancer are being told about the opportunity to take part in research. Also, how many take up that opportunity. National data is published and then statistics are provided by NHS Trust and tumour type.
The results are not that encouraging. Since the survey started including questions about research, the dial has been stuck at less than 1 in 3 people having that possibly life-saving conversation with their doctor. If anything there is a slight trend downwards In 2012 it was 33%, inn 2013 it was 32% and 2014, 31% (see pages 61 onwards of the report). If you have brain or haematological cancer the figure is 37%. If you have skin or urological cancer it’s 17% and 14% respectively.
I am sure some people would say the drift downward is a statistically insignificant drop. But consider this.
For arguments sake, say cancer research is a business. And say patients with cancer are its customers. Then in business terminology we would be informing the stock market that sales are flat, the growth forecast is poor, and there may be a case for issuing a profits warning. And we all know what has happened to even our biggest companies like Tesco when this happens.
What are the causes for this lack of ‘growth’ in the numbers of people with cancer being offered the opportunity to be part of a clinical trial? Why is this happening in a clinical area which had had the longest run-up at promoting research to patients?
I don’t know for sure, is the answer. But I hope that it is an agenda item at the next board meeting of the National Cancer Research Institute (NCRI). Finding out why and putting in measures for improvement will be important.
Arguably, for instance, the cancer patient experience survey should be one of its performance measures. Personally I would like to see us aim for results nearer 50% and 80% by 2016 and 2019 respectively. Arbitrary perhaps but we need to be aiming for something.
I do have an opinion as to what’s not happening. It may be wrong. Nor is it likely to be the whole picture. But it’s based on conversations with public involvement colleagues in cancer and others around the country over recent months.
I think our consumer groups in cancer are not being listened to as much as they should be. I think ‘change’ may be drawing them away from the business at hand. I think that they are not being given the funding and support necessary to be what they can be – an important part of the ‘sales force’ that delivers on the NHS Constitution pledge that every patient has a right to information about research. Finally, I think we are failing to engage their colleagues in the NHS workforce sufficiently in this agenda. But that goes for all conditions.
If I were invited to that next NCRI Board Meeting I would be encouraging them to look at NIHR’s strategic framework for increasing participation in research ‘Promoting a research active nation.’ It doesn’t hold all the answers. However, I would be suggesting they look at how to translate its clear and considered approach – from the research ambassadors programme to the ‘OK to ask’ campaign – to cancer. And then to back it strongly.
There are some reasons to be optimistic. The members of the NCRI Consumer Liaison Group are a formidable force and well-led. Our cancer researchers and clinicians are committed. Cancer Research UK now has a public engagement strategy, budget and team in place and will be putting more weight behind this agenda in the next 12 months. Let’s hope other cancer charities follow suit.
For this results is not good enough for people with cancer and their families.
Simon Denegri's Lay Review 
The structural changes to the NIHR’s local delivery networks have brought visible improvements for recruitment into studies and clinical research in other diseases, which are most welcome.
These successes support the evidence from cancer trials over the past decade that patients’ support for clinical research is not merely an ideal but a reality. We patients can and do volunteer to take part in research, we recognise that research helps improve the evidence-base for medicines and treatments, and we want to help fellow and future benefits.
What’s more we don’t just volunteer in dribs and drabs; we do it in our thousands, and some of us do it time and time again.
But for all this to happen, we need to know about the studies available. I’m a well-educated man and I ask questions and I try to make the best of bad situations, but when I was told I’d got cancer, my first reaction was absolutely NOT “Oh goodie, this diagnosis offers me an opportunity to participate in clinical research.”
The reality is that it has to be the medical profession who ask the question of the patient, “Are you interested in research opportunities?”
So although it is good to see that the NIHR is recruiting more and more patients to trials in other diseases, as Simon says, it is indeed disappointing that so little progress has been made in the past three years in terms of approaching cancer patients about research.
it is especially disappointing because it goes against the evidence from NCPES and other surveys, which shows consistently that cancer patients are quite open to being approached and very responsive when it happens – 66% of those of us who are asked go on to participate. Whether we participate or not, 95% of cancer patients are happy to have been asked and offered the opportunity, and over half of the cancer pateints who are not approached say they would be happy if they were.
The local/regional variations that Simon mentions are so wide that they produce a geographical inequality of access to research opportunities for cancer patients that needs to be addressed swiftly. Evidence shows that patients offered research opportunities are more likely to report higher satisfaction levels with their care; even more likely if they participate in research.
We also know that research-active Trusts are more likely to produce better outcomes for the patients, all their patients, not just those taking part in research, so it is in everyone’s interest to have more research opportunities in our cancer services, for them to be offered to cancer patients, and for patients and their advocates and charities to ask for them.
The NIHR’s annual Ok To Ask campaign offers the NHS opportunities to promote both the availability and the need for research. I hope that all Trusts will participate next year within their NIHR local research networks, especially those where patients are reporting that they are not having discussions with staff about taking part in research.
Perhaps too the NCRI and its Partners might instigate a national cancer research week across the UK to encourage all of us to have the conversations that are not yet taking place. Not a fund-raising or point-scoring week, but one where we help clinicians, families and everyone else just to think about the benefits that cancer research has brought, and the benefits it will continue to bring, if only we can ask more patients to participate, and help and support them to do so. A week when the NCRI Partners can show everyone how, if we work together, we can and will one day beat this thing.
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