What is the NCRI consumer forum?

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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 importance of the NCRI consumer forum and the patient and carer involvement in cancer research.

The consumer forum carefully looks into design, delivery, dissemination and advising on funding committees in the UK. 

The consumer forum is a group of 86 cancer patients and carers, some of us former patients and former carers sadly. We are involved in cancer research, in all aspects of cancer research – design, delivery, dissemination, sitting on funding committees, sitting on the NCRI’s clinical study groups. We cover everything to do with cancer research in the UK. Sooner or later, if a piece of cancer research is put in front of a patient in the English NHS it will have come across one of us and if it’s in Wales, Scotland or Northern Ireland the chances are at some point it’s come across one of us.

Why is it important that this forum exists?

There are two reasons why the forum itself is important. First and foremost is the importance of simply having patient involvement and carer involvement in cancer research. We are the users of the product, it’s why in the NCRI we actually use the word consumer – it is to indicate that we are the users and also, of course, we are paying for the product. We pay our taxes, we make our contributions to charities, it is our NHS service and our money, again through taxation, that pays for the drugs and the treatments we have. So we pay for the product, we use the product which is why we are consumers. That also applies to clinical research especially but all forms of cancer research. Again, we are funding it and we are the end users so we should be involved in every process. That’s the moral argument, these days there’s also an argument for having active citizens, that actually you can’t ask people to participate in research unless at some point you’ve asked people who know what it feels like to have some sort of say in the design of that research. So there are all sorts of arguments for doing it, our argument is actually really simpler – we make the research better quality. If you involve patients in designing your research, we believe, you are more likely to recruit to time and target. You are more likely to produce something that is not only useful to patients but patients will be able to take it and keep to whatever the treatment regime may be. That, incidentally, also applies to methods of preventing cancer. If you actually want to stop cancer happening and you think that involves changing people’s lifestyles, you should have people involved in designing that research as well.

The forum exists to serve two main purposes. One is to provide the NCRI with a pool, a talent pool if you like, of reasonably experienced consumers, patients and carers who actually understand a little bit about research before they come in to the NCRI, often people who have participated in trials or had a loved one participate in a trial or have some other research experience themselves. So that’s first and foremost what we do – we are a talent pool to serve the NCRI. But secondly and increasingly we are a group that’s beginning to hear the sound of its own voice in a position of advocacy and also in a position of undertaking research ourselves which is one of the reasons I’m here at conference this year, one of the things I am doing is actually presenting a research paper that we’ve carried out in the National Cancer Patient Experience survey results.

How can people get in touch?

If anyone is interested in the work of the forum they can either find our page on the NCRI website or, better still, simply sign up to receive the NCRI newsletters. So the NCRI will keep in touch with them about everything it does, not just what we do as patients. After all, our purpose as involved patients is actually to make research better. It’s about the research improving people’s lives, not about our involvement in it. If they actually wanted to become an active member of the forum, the first thing to do is actually apply for one of the roles that we have available within the NCRI, they are advertised twice a year. We recruit twice a year, we train people twice a year, regular as clockwork. Anyone is welcome to apply but it’s fairly tough competition. They’re also welcome to send us an email and we’ll tell them everything we can that they need to know about the forum and what we do.