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.