NCRI Cancer Conference 2010, 7 November 2010, Liverpool

Derek Stewart OBE – NCRI Consumer Liaison Group, UK

Patient involvement in the development of cancer treatment

Derek, thanks for joining us on ecancer.tv. Give us your quick CV.

Quick CV: Derek Stewart, I was a throat cancer patient back in 1995. I then got involved in a whole variety of patient voice being expressed in cancer research and cancer services and at one point was Chair of the Consumer Group in Cancer Research.

So you moved from being a patient to a consumer. What were you consuming other than being the patient?

The interesting thing is we use the term consumer in research because when you are being treated you don’t get much choice, but one of the things you do have choice in, so it’s far more like a customer, is in research because it is the one thing you are asked for your informed consent on. So in that respect we still use the word “consumer”, certainly in cancer research, but if you are to look in other areas, like mental health, they would describe themselves as “service users”. The titles don’t really matter; what is crucial is that sense of partnership, working together and finding solutions to different diseases and in our case cancer, and how we can do something about it.

So who do you work with? You are an ex-patient who has had cancer of the larynx, I suppose?

Yes.

And who do you work with, who are the other people in your team, what are you trying to do?

The Consumer Liaison Group is a sort of national voice for patients in the UK and it enables patients to get involved in working with researchers. So if a researcher wants an idea and thinks would this actually run with patients, so in other words could we recruit to the trial, but actually is the study designed in a way that sounds good enough so is the information leaflet looking good enough, would it attract patients? And sometimes it’s about sitting on a trial management group to give that external perspective, lay voice or sometimes, if you like, customer feedback.

You gave a spectacular talk yesterday at the opening of the National Cancer Research Institute here in Liverpool and you were talking about trials and the difficulties of getting the patients’ voice heard at the design stage and at the monitoring stage and then presumably also at the analysis stage. NCRI are now into every clinical trial in the UK?

Sorry?

Are you saying that the patient is now involved in every trial in the UK or just ... how many trials are we talking about here?

I think there are a number of trials. There are an increasing number of trials in which patients are now involved. It’s incredibly difficult to give a number because although we tick a little box that says, “Have you got patient and public involvement?” that may just have been going along to talk to a focus group or a self-help and support group. So getting the data, raw data, is very difficult. However we would say there are hundreds upon hundreds of trials, but it’s not about putting somebody onto the committee or being there, it’s about purpose, impact and benefit. What is the purpose? Why do we need to get that insight and how might it help us, and how could we measure the impact and whether it’s of benefit? So if I gave you an example where if we run a trial or you the clinicians or researchers want to run a trial and it fails to recruit, then we’ve wasted a huge amount of public money that’s been put in by the funders. So it’s really important that we make sure that our trial is of the highest quality, and often you will say that that’s about the scientific quality, but if that scientific quality is good, but the question it’s asking is fundamentally wrong for the patient community then it won’t recruit properly. So it’s about getting those voices in but making sure it’s targeted. So it’s not about putting somebody onto every committee, every trial, it’s about is it appropriate, is it going to cause benefit and can we just measure and gather the story of how it’s changed things. So prostate cancer recently went from 40% recruitment to 70% because they really looked at the information leaflets and said, “This doesn’t sort of ring true to us as patients.”

We are catching up with the Americans who have been doing this for a long time. What the Americans have been complaining about lately is a decline in recruitment to clinical trials; I heard that in Brussels, the European Commission admitting that overall clinical trials recruitment is down in the whole of Europe. Are you fighting a rear guard action?

I think we are doing very, very well in the UK and certainly the trials at the National Cancer Research Network, because ten years ago I think it was 4% of cancer patients going in and I think that’s increased to 18%. So we are doing fairly well here.

Eighteen?

18% now of patients going on to trials. So we’ve seen a massive recruitment and, of course, we have the overarching body, certainly in England, of the National Institute for Health Research which again is making sure that some of the infrastructure is in place to put the funding there. So I think we are not in a rosy place, we are not in a wonderful place, but I think we are fighting a rear guard action. But the patient movement is interesting because I think it is saying, “We do want to take part in trials, or at least have the opportunity to find out about trials.” The biggest complaint is patients are not told about trials that are relevant to them and they don’t know how to find out where to go and yet it is a pledge, certainly in the NHS Constitution for England.

I was going ask you exactly that. I’ve got a friend with cancer - how do I find out a suitable trial? They come to me because I am the only oncologist they know and how do they do that? I work in Milan, I don’t know how you find a clinical trial in the UK.

OK, there is work behind the scenes. There will be a new UK trials gateway that will help people be able to go on; certainly through organisations like Cancer Research UK, they have a very, very good database. So if there is somebody watching who says, “I would like to find out about a good trial”, that would be a number one place for me to go at this present time, and I think we will see that more joined up. The great thing about what CRUK have done is that they have actually put in lay summaries so it’s in a language that I would understand rather than a three-armed randomised control trial with a name that has been made up of acronyms, you know!

I think that is very interesting, and particularly the contrast in the uptake of trials by patients in the UK compared to mainland Europe or the States. Do you think this has been driven by the patients or are there other factors - funding help, or is the bureaucracy less?

Right, I think in the UK we are very lucky. The National Cancer Research Institute, established almost ten years ago, has brought the partners together in a way that I think the whole world is looking at, because it’s looking at our whole overall structure, but certainly NCRI is leading the field in that area. So the partners are looking at having a strategic review, so there is a sense of knowing what research needs to be done. And of course that’s backed up with the National Cancer Research Network which is enabling all those trials to take place. And yes, you’re right, it is against a background of political support for research in science in this country which helps us keep bright and sparkling minds. But it also means that, as patients, we are pushing, I hesitate to say from the bottom because I don’t think it’s like that anymore, but we are pushing from one side, we’ve got Government pushing from another, and actually we’ve got the research community and scientists saying, “Actually we need to be doing this together.” And I think that’s what makes this conference quite unique. And earlier on you said America has patients; they have often got patient advocates who are sometimes on the outside, and I think we are very firmly on the inside and part of the whole.

I am glad to hear that. It’s very important that patients get clarity of where to start their journey, and their journey starts with information. I am involved with ecancer.tv and the European Institute in Milan in a European Commission project called Eurocancercoms, and this is set up to develop essentially an NCI.gov or a clinicaltrials.gov for Europe, because more and more, of course, we are seeing patients crossing borders within the European Community to get treatments that they can’t get in one country. I mean the UK has had a problem with access to a number of drugs for cancer which have been available in my institute in Italy and people have been actually physically moving with their feet, which is an awful state to be in. And so I think that other people are reaching this and it would be very important to take the cancer help model and take it out. Just another line really, and that is, if I’m a patient and I’ve had an experience in my cancer journey and I think now that’s something that really needs to be sorted and I have an idea of an area of uncertainty, I come across uncertainty, uncertainty is where a clinical trial question starts, who do I tell?

OK, if I was to be a patient and had a problem and I saw there was an issue and wondered is anybody looking at this, certainly most cancer networks throughout the country have some sort of patient group attached. You could go along there and say, “Is anybody looking?” Most of those groups, and that’s in services, are tied in with research, and that’s something we are doing more and more. So they could take that issue. There are groups like something I’ve called The James Lind Alliance, who do a wonderful role in terms of priority setting in which they get everybody together and they get the patient groups and they have them in a separate room from the professionals and say, “What are the issues for you, what are the unanswered questions there and what are the unanswered questions for the other group?” And then they bring them together and see where they match and where there are areas of contention and it’s then up to the group to then say, “Well we should actually be looking at those issues of contention as well as the ones that we normally do.” So I think there are two tracks. One is go along to a local group and start to ask those questions, but if you don’t get any joy there is a National Consumer Liaison Group, it is on the NCRI website, if you go through there you’ll get in contact with them and we can then voice some of those issues. And then of course there are all of the different charities that work through NCRI that can be another good source of going and raising things.

As one who is fortunate to be the international observer at the same process happening on a national basis in the States, except it wasn’t just patients and scientists and doctors talking about research priorities, it was talking about funding priorities and talking about research and supportive care and palliative care and the whole gamut of what a broad based charity would be looking at. Has that been done in the UK and if so what was the result? What did cancer patients by their millions vote for?

To begin with when patients get involved, I believe that there was a view from the scientific community that we would all want to see issues about living with cancer in the psychosocial aspect, and yes those are vitally important. What’s interested, I think, everybody is that patients are showing a great interest in the science as well as, it’s not one or the other. So we have had a number of initiatives, certainly here in the UK; one of them was the supportive and palliative care initiatives and collaboratives that looked at bringing those communities that look at the issues that matter for patients. They have just come to an end and there has been a new rapid review of research into living with and beyond cancer, as well as that difficult stage of the end of life care. And that rapid review has gathered together all of the research and then starting to look at that. And I would say the shift in the last ten years has been mainly from NCRI being just about the science to being about the whole journey for the patient, and that is the journey rather than the clinical pathway, and it takes account of those needs. So I think there is more of an opportunity for research in those areas and, of course, with the research hopefully what follows is better service delivery.

Yes. You might be interested to know that the top of the league table on the voting in the American system was cancer research. This NCRI rapid review has come up with some priority statements?

The rapid review into what is called survivorship and end of life care, but as a patient I prefer it as living with and beyond cancer. The rapid review was a very interesting model of how we review cancer research in this country. It involved the chairman bringing in the patient groups and then hearing from the scientists and those researchers in that area as well as then the funders. And what it’s done is come up with various recommendations as what might be priorities and what we should be looking for in research in that area, which is about living with and beyond cancer; and we actually need to know some more about that. We have roughly calculated there are about 2 million people, like myself, living with and beyond cancer, but there may be more and there will be more in the next few years. So the more we understand what their needs are, both in terms of the living with, but what could be the possible after effects? Now one of the speakers at the conference here at the National Cancer Research Institute was Patricia Ganz, Professor Ganz, and she was saying that every patient finishing their standard treatment, at the end of that should be given a care plan that says, well here’s what we’ve done to you and here’s what we think might be happening next and here’s what you should begin to look at. And I think patients would really welcome that sort of knowledge because many of them, when you have finished treatment, it just feels as if suddenly everything has come to an end because you’ve had all of that great support and then suddenly there’s a vacuum. So I think to have something more on paper that could carry forward, and I hope the rapid review will get researchers looking at things like that.

I thought Patricia Ganz was good too, and she was saying that what’s interesting in this business of what is there after the treatment is this void and there is nobody to support any more. And particularly the medical oncology and the surgical oncology group have essentially done their bit and washed their hands.

Yes.

And she was lamenting the lack of the general practitioner in the multidisciplinary team and the lack of communication throughout the whole process of treatment with the general practitioner who knows the patient or is supposed to know the patient, best. And therefore the general practitioner is left with a discharge note and that’s it, but at least gets a discharge note which the patient doesn’t get. So the patient should be getting a “This is your care path from now on”, the GP should get the same information and should know what are the possible sequelae, the longer term damage that some of the treatment might have given them. It’s not a common issue but it can be a common issue. And Patricia Ganz, I thought, was making a very good point about the fact that the patients who have had cancer are at high risk of getting a second cancer, not a metastasis although that can happen too sadly, but a second cancer. And we are not taking the opportunity we should do, as carers, to re-educate, to help to promote good health, exercise, good diet, keeping your weight down, keeping off the cigarettes and the alcohol etc. I thought that was very appropriate to the NHS although that was coming from Los Angeles.

I couldn’t agree more. When you’ve finished treatment you are just sent away and we just don’t talk to our GPs. If it wasn’t for the fact that, despite the damaged voice, I have a voice, I just wouldn’t explain to my GP what had happened and what treatments I’d been through. But our GPs, I think, they are just treated shabbily in this. They make the referral, then we are taken into secondary care, we are dealt with by our oncologists, and I was dealt with very, very well, I have got no criticisms, they did a fabulous job. But actually I then come back now and I live with, so for myself I live with swallowing ....

You live without.

With no saliva glands, but nobody gave me any advice on that or support; it was left to me to go to our local support group. And I just think we could be much, much better at tying up that after care and support for patients. But we need to involve our GPs, they just don’t know enough about cancer and they are not given... and if what we read is true, that we will see more people living with and beyond cancer, then the GPs and nurses and district nurses and, I think, the key group will be care workers because many people, if it is to be a disease of the elderly as it is for a lot, then there are going to be a lot of people in care homes with possibly chemotherapy being delivered in that home. So we have got to do an awful lot more engaging the whole health community in supporting cancer.

How do we tackle that? Knock on the door of the Royal College of General Practitioners?

I think there is a bit about knocking on the door of the Royal College of Practitioners but I think there is also about talking to GPs and if GPs are to take more of a role in commissioning, certainly in England but also in Scotland, you look between health and social care as they do in Wales, I think we’ve got to do more about engaging local communities. This is going to be a huge issue in the future. Now I say an issue as if it’s a terrible problem, because the science is making the treatments better, but there is just going to be more of it so how do we just make sure those people are engaged?

Derek, it’s been an absolute pleasure talking to you. Thank you very much indeed.

OK, thank you.