So, building research partnerships is a joined-upness, because, fundamentally and it’s in part of my last answer as well fundamentally involving people is about a relationship. It’s about changing the relationship both in the culture and climate, how we work, but also about why aren’t we learning from each other. Because patients don’t want, we keep our patients in silos. The PPI leads in all of those areas, most of those say, Well, I’ve developed these people, I don’t want you pinching them. Right? Because what they don’t want is them going on to national work because they’ve invested in them. And I was once challenged about that and I said, Look, learning is about helping people to fly and grow their own wings. That’s what a teacher does, you let people go. She should always be delighted when they’re doing more than you ever expected of them. And I think that’s what we see. Patients don’t have one disease. What irritates me more is I get asked about swallowing trials. I get asked about eating trials, diet trials. I want to know about trials in cirrhosis, psoriasis. I want it on osteoporosis, which I think, given my mother, I’ll probably develop. I want to know about mental health. I want to know about, you know, living the effects of radiotherapy treatment, radiation, which isn’t just in cancer. So, why do I get fixed in my little box? And researchers, why do they come along and because they can only come to me and ask me about that because they know I’m a cancer, that’s wrong.

We should have a national register where people log on and say, Heres what I’m interested in, tell me about the trials.

So it’s training about are you asking the right questions? Are you asking them in the right place? What are the questions we need to ask and where do you ask them? Because theres a difference between asking the questions to make sure that policy documents have research in them. The NHS constitution’s a great example. Weve got a duty to talk about research in there. Getting that into that policy document and getting it honed in the right way takes a lot of time. How do you change policy in Europe? How do you get a group together? So we need to then train people up in that. We need to help them and give them peer support. We need to give them sessions or about master classes I hate that word because it’s the master. But those, you know, a real sense of Where are you asking questions? What are you asking? Why are we asking them? Are we working across patient groups?’ So that’s the bit for me that’s next on the agenda and I think it will take on.

So that sense, but actually it’s up for us as patients back to leadership when were there to be bloody minded and say, “Could we just, I want to write this down”. Because when I do that, because again it’s why it’s going to be shared enterprise. If the researcher writes down, ‘This is what I want to achieve with patient involvement; this is what I’ve written into my plan and it’s got approval. If they haven’t checked it with us, it’s what they wanted from it, so I did it as a consultation. I had a focus group but actually if we come in to we say, “Do you know what? We could help you all the way through your trial.” So not only is it a better plan, at the end of it that research, an average researcher say, “I was nearly going to give up with that research.” If it had not been from a patient who said, “Actually worse things happen in a factory, brush yourself down, let’s get on with it,” I would have given up. So impact, were getting better, weve got more examples. I think we could be tighter on it, and I just did some work where I had a whole lot of Trusts giving me examples of what they’re doing. And only one of the twenty three had a measure in there. So we need to, we need, as patients, as well as research, need to get better. We need to tie some things. So what we will be doing is saying to people, “Provide us with a report which categorises the impact, not your input. What difference does this make? And tell us the stories of the difference.”

But I also want some of, so I want qualitative measurements. I want people to be actually I know some of these, I want them to say I know the language changed and I know that’s qualitative but we can say the language changed. We can say, “No actually we now know this research, we think, we may not be able to, but this research are accrued to time and target better than one I did before.” Now we might not be able to say that’s to the PPI, but wouldn’t it be great if we did a trial, weve got it on the books, were about to go and we actually gave two information leaflets. We did the same trial with the same ethics, but when we said to the ethics committee, “Look wed like to give them this patient information leaflet and wed like to test it, because the trial’s the same, the research is fundamentally exactly the same, but wed like to test out this information sheet, this trial protocol with this lay summary and this one that didn’t have the involvement, that actually we could measure whether it accrued to time or target.” We could bring together the researchers and say, “This is the way to explain the trial, you do your way, well do it this way.” So actually we could do some quantitative stuff that could really do.

So when something like one particular research, it was designed by very, very clever people, wonderful clinicians. But because they were all hospital based, they planned their recruitment in secondary care in hospital. All those patients don’t see that. If they’d have been involved, they’d have said, “Well, do you know what? Most of the time I didn’t even go to the GP, I went to the local clinic.” That voice to researchers would change that research. So if we look at referrals, right, to hospital, the sense of where the journey and going to hospital and taking part in research. If it means that’s a forty mile round trip, I don’t want to be going for my research on a different day than I went for my treatment. Now, as patients and members of the public we go, that just makes ordinary sense. Not when you’re a researcher or a clinician. They’re looking at their timetables. If our voice is heard at the table we make that different. And you could apply the same sort of things all the way through. So our experience, that primary skill, that, and it is the expertise of our experience. Never forget it; it is why we sit at the table.

For me, there is far more involvement, there were a few of us to begin with, there are hundreds, in fact probably thousands of people now actively involved in research across diabetes, stroke, mental health, primary care. And I apologise for the ones I’ve forgotten and that, mental health, but there are a rich good, great, group. So in those sense I feel that I am, to begin with, too many people like myself had to feel that we had to know everything. We had to feel as if we had to know about how research functioned. We had to know about the landscape of research. Who all the organisations were, from the National Institute for Health Research through to the MRC [Medical Research Council] too, all of those acronyms that exist. We had to know who a lot of the people were because we were trying to change policy, governance, practice and practical involvement. We were trying to change individual light bulbs as well as trying to change the way lighting went on in a room, to changing the way architects plan for buildings and the use of lighting. And sometimes thinking, ‘Well are the light bulbs were using today the light bulbs of tomorrow, so how do you influence government policy and check?’ So I think for some of us that was almost too much, and to know too much. The great thing about more people being involved, and what I’ve seen, it, for me, is I don’t need to do as much. You can say, “Theres a group there, theres a group there go and talk to them.” When there are calls for us to have our voices in separate ways, the internet has, and social media, are showing us that we can invite more people to the table and change the way involvement is, and I think, so personally for me, I think that sense of, there are more people and I would say that I think were clearer now about what involvement is.

Some people I’ve seen who’ve got involved have been sometimes wedded to changing one thing. So they have wanted more research into a particular cancer or more of a particular type of research and they have some days banged a drum on that. And again there is nothing wrong with that.

What I urge people to say is, “Once the door is open, you can make those points. You can continue to hold those, but what’s really important is that you are part of a wider dialogue.” Some people have got involved at the other end of the spectrum because they’ve had a very, very poor experience. They’ve either had a loved one who has died or the treatment they received and sometimes with the best will in the world, sometimes those are horrendous. We need those voices in there. But again it’s, how do you have that as your passion and your drive, but how do you leave some of the luggage of that at the door? Because what were most interested in is working in partnership and getting all those voices together. And once were there, course we can take those agendas. What’s important is when we arrive in the door is to find which is the best other door or window or place to make those points. And when we do that we become a force for real good, we become a movement of change and we become partners.

Now it depends, I suppose, if the question comes at me, ‘How are you representative?’ and it’s got a slight attitudinal tone, to the way the question’s answered. I have an attitudinal back question response, and I retort, which is, “And how representative are you?” Because, if theres a GP at the table, are they representing all GPs? Is the clinical nurse specialist representing all clinical nurse specialists? Is the researcher representative of all researchers? But, that’s when I’m pushed, right? Representation is an issue. It’s one that we all need to face.

So I actually come with a whole lot of almost representativeness. So it’s just helping people. So on its base level, it’s about helping people say, “You can’t be representative. You’ve not been voted in by, you’re not an MP, you don’t have a constituency”. But actually if you’re going sit at the table, along with others, it is important that you are not representative, you are a representative of a patient. You are a symbol of that patient. You’re like the word ‘representative used as an artist. It is a representation of a jar. It is not a jar, it’s representation of a jar. So I sit there, not as a representative with constituency, but what I’ll often say to people is, “It is important you have, not a constituency, but how do you ground yourself? How do you, when you sit at the table, go out and talk? How do you go back and talk to self-help groups about what you’re doing? Do you report back?” Because it’s got to be a two way. It’s not me sitting at the table, “Oh good I’m here.” It’s me sitting at the table going, “Actually I’m here but what job have I got to do to talk to others?”

And has your involvement in PPI changed you as a patient over the years?

Changed me as patient, and other patients. A lot of what we put together in this strange world of involvement or even worse, PPI. And I say worse because too often I see people say they’ve got a PPI strategy or a PPI plan, which is about involving people in research. But really it’s about better research and it’s about making a difference to peoples lives, and too often we forget that last part. But, theres another element that doesn’t get touched into, involvement that changes peoples lives because of the involvement not of the research. And it’s something I’m having a growing interest in. And if anybody who’s watching this, please let us know more and more about this. But I know I’m a better patient, I’m a better person because getting involved has made me look at my health. I now am a healthier person because I now am interested in what the latest research is, not just in my head and neck. So, I will read stories that help me about swallowing or saliva glands and speaking when you can’t have enough breath. So, I’m interested in those and I now know how to read some of those documents and find out where they are because they’re not often things that you just immediately turn to.

They’ve changed me in, and because I’m more actively involved with the Health Service I know about things like, and I’m laughing because I’m in the middle of this now, it’s something called From Couch to Potato no that’s not really what it is from couch to 5K, where I’ve now taken up running, and I’m taking up running on an evidence based programme that helps me to run 5K. And it’s an evidence based programme because when I tried it before I gave up because I tried too hard and now I’m doing it. It gives me breaks. Its evidence, it’s brilliant. But it’s helped me fundamentally as a cancer patient because when I’m out there and I meet somebody else who’s a cancer patient my cousin was diagnosed. I’m giving him advice, not on the research, but I’m saying, “Ask about research that’s going on. Ask about whether your clinician is research focused.” Because when I go to a doctor, I don’t want to know that they’re giving me the research that was years old.

It doesn’t take a lot to notice that I am white and of a certain age. It’s a wee bit more difficult sometimes to realise that I am educated, but only to a certain level, and that I am probably fit into that latest survey of middle class, right? And that, you know, I am retired because I’m a certain age and I can’t prevent any of those things, that’s just me. And theres nothing wrong in me being involved because what we bring is a particular perspective. But, you know, if I look round the room and it’s just more mes’ because there might be some woman there as well because we owe a debt, because without the woman I don’t think we would be here, because it was the woman’s voice, certainly in cancer and in childbirth, that really were the drivers. But, if it’s just white middle class people, we owe ourselves a real responsibility to say, this is wrong.” And it’s wrong on two levels: it’s wrong if we are just the only people whose voices are there, and it’s wrong if all were doing is being that voice.

Costs and benefits. The cost of this in terms of time for me is huge amounts of hours. Sometimes I receive an honoraria payment. Sometimes I’m paid for bits of work, right? An awful lot of what I do probably is not paid. I view that when I do get paid for some of it, it helps me do some of the other bits. If a researcher phones me up and says, “Would you help? Were doing a, I’m doing some interviews for researchers for some PhDs and post-grad funding for ” I forget, it doesn’t matter what the name is. So here I’m not being paid for that and I’m not looking for a payment for it because I learn so much, right? But I think the bottom line for me in terms of payments is people should always be paid for excuse me their expenses, out of pocket, it’s an essential. Should be paid for, if it’s, and I disagree with others, but my view is if it’s looking at a research study and it’s twenty minutes/half an hour and they just want a quick look, no problems; I’ll do that. I think that’s volunteering. If it’s just going along to a focus group or a one-off thing, if I get a, if they manage to put in funding for giving me a voucher to go and spend in Marks & Spencer’s that comes as a real bonus. If they pay my travel I’m delighted. If it’s local I’ll do it. If they want more than that however, and they want just, “Well I’m now doing it, would you now help in the next stage?” I think that’s getting in to bits that are involving me in more than just a casual acquaintance, right?

If it then starts to be, they’re asking me to look through our list of twenty trial protocols, or they’re saying would I give up a day where I, or a half day where I’m sitting on a panel where everybody else is being paid and everybody else is a professional in his trade, but they want me to be an equal at the table, then I think were moving in to somewhere where honoraria payments in line with INVOLVes advice and guidance, is absolutely sound and right. And that, and some like RDSs, the Research Design Services, have little pockets of money where they give it and then get it back if the researchers thinks… So that sort of credit union is a great way to do that. If the researchers are saying, “Actually I want you to be on the research as a partner or as a, one of the named applicants and we want you to be, to join this trial all the way through and help get us get a focus group”. That’s actually moving closer to work, and at which place then I go into more of saying, “Well actually that’s going to take up significant amounts of my time”. And because it’s work I’d rather move into a payment process so that I then declare that as I would with the honoraria, but actually go into a receipt mode and an invoice, because actually I do make a living from some of this.

* An honorarium is a one-off payment made for voluntary services, which you can be taxed on.

When you first go to some meetings, there is a sense, I’ve been in rooms this is rare, but it does occasionally happen that all of the clinical leaders are all standing talking. And you walk in the door and you feel as if you are a lemon amongst oranges. And they all turn round and they look at you, and then they turn back to talking about what they were talking about. And to begin with I used to think, ‘Oh!’ And then after a while I realised that, that was more about my sensitivities and it wasn’t a sort of. I sort of thought they always met regularly because they don’t, so when they were in their huddle, they were playing catch-up. They were going, “Have you seen the latest policy? Have you heard what’s happened about this research in a particular Trust?” You know. So, they were only playing catch-up. And actually what they would often do is turn round and go, “Oh sorry, you’re the patient rep, you’ve come and.” And I’d be made most welcome. But how do you open your mouth for the first time? You’re sitting there sometimes with the people who treated you: professors, senior professors, professors with strange titles for their professorship, which sort of lifts them up on a plateau, Nobel prize winners, Knights of the Realm. And you sit, you go, “How do I speak here?” So I found quite often that my tricks of the trade are: ask to speak early on, so that, just say and if they didn’t have done introductions that’s a good start. “Excuse me I’m new, could people introduce themselves? Could I say who I am?” Keep it short; it’s not a life story, right? But just say, “I’m Derek, and, you know, I’m here as representative of the public patient, I’m a lay whatever.” And just get people to quickly introduce themselves. That breaks the ice for you because when you’re nervous, if you don’t speak quite quickly your voice dries, mine dries quicker than most, so I want to get in there quickly.

Second one is not to bang the table, right, about some issue. To sit and listen and take part, but to ask one question in every meeting because you don’t want to hold the meeting up about what something means. Could somebody explain something begins to focus the group back into speaking a language, which is understandable because they love their acronyms. They love their acronyms so much that as the longer we have become involved we have created our own acronyms in the world of patient involvement. So, do not think it is only them, right? So, just breaking the ice with a sentence about something, but if you don’t want to do that just say to somebody next to you, “Could I just ask you, would you mind, could I write sometimes to you, what does this mean and pass it across to you?” Because it, we don’t want it to stop the meetings going.

I came to be involved in research, and it is not, I assure anybody, it was neither a knowledge of science, nor knowledge of research, and I’m sure my science teachers are all turning in their graves at the idea that I, because I knew nothing and was very, I think my last mark for O Levels was seventeen per cent. So I don’t think I even sat the exams. So I was not somebody who’d roll up. But, I was at a meeting where they asked, we were asked, or told that we had all this research that had built up and how do we tell patients about it. In my naivety, or some might say stupidity, I asked the question, “Well, why are you waiting now? Why didn’t you involve people earlier on? Because to tell people about things after it’s been done seems a bit like sort of, you know, bolting the stable door after the horse has bolted?” I then was tapped on the shoulder and somebody says, “Could I introduce you to somebody?” And that meant I went along to I’ll cut this story short I was invited along to a group who were talking about involving some patients in a committee they had in cancer research.

When I began, I began thinking that they wanted the patient voice at the table. They’d had some involvement in some research, but what I’d noticed they’d got when I looked or met some of the people, they were people who were , how can I say this? They were of their ilk. They wore similar hats or clothes. And by that I mean, it was a cancer patient, but they were a doctor, right? They were a cancer patient, but they, but they’d worked in research in the food industry. Now, there is nothing wrong with those voices, they are great because they understand the research, they understand, they’re great. But there isn’t a rawness to it and it made me realise.

The third one is about building up your competences for the particular thing you’ve been invited to get involved in. So, the researcher doesn’t know what they want involvement for. They’ve just ticked a box and you happen to have helped them, and they don’t really know what they mean by involvement. They’re lovely and they’ll be great, but they don’t really know what they want. So, you have to say to them, “What do you want me here to do? What’s my role?” And they’ll say, “Well we really want you to help us look at the patient information sheet”. “Ah yes, but, but what do you want me to look at?” “Oh we want you to look at the language, the tone, the, the way it’s laid out, the words we use.” “That’s fine I can do that.” Or, “We want you to sit on our committee and we want you just to ground us. When were talking in, just remind us what this is about.” Or, “We want to write the lay summary,” or, “We want you to sit on our trial management committee. And we want you to be our person who just calls us to order.” Or “We want you to read our minutes.” So you take any of those and you look at it. You go, first of all you say, “What skills have I got? Have I got skills on reading documents?” And if you haven’t, you say, “I need some training in this.” Or “I need some skills on sitting on a committee and understanding minutes, and what the committees about and just a briefing about that.” And you want to know about the agenda and the hidden agenda. You know, what is really going on here, right, because that helps you. And so that’s the real basis, and then that sense of just keeping that diary about what it is you’ve learned in those things.

We developed our own, which was fine for the first few people, but when somebody new arrived do we do the whole training course again for that one individual? So, what we should be doing now is altering and using , I’ve forgotten what they’re called, MOLCs’ mobile online learning courses so that somebody could sit at home and just get the information they require, but fundamentally in involvement.

It’s not about, you can’t learn this from a book or an app because the nature of involvement is a two-way process between researchers meeting with patients, and patients learning and meeting from researchers. And ultimately, we can rely, we could look towards other methods, but you mustn’t take away that fundamental because that’s the bit where you get to double check things you think you understand, but it’s not til you’re talking to somebody. It’s the nature of learning, right? It’s not an abstract, it’s got to be with people, it’s experiential. And that, I would also say, is in learning and development. Too often, we think about let’s provide a course. The course doesn’t give you an answer, it’s the coffees, the chatting with people, the sometimes being off the task, where somebody says, “Oh I’m a qualitative researcher” or “I’m a researcher looking at case control groups” and you go, “So what’s that, so what does it involve?” Not only do they tell you what it is, they describe it in ways you can understand. And then because it’s experiential, you might not in the next year, ten years, ever come across a case control study again. Chances are you’ll come across it within a few days and suddenly you go, “Bingo!” And that synapsis in the brain, that linkage across, from fact, experience learnt, and then to meet with somebody who talks about it, and suddenly it then, we hold onto it then. So I think learning has changed; it has changed for the better. We are better at defining what people are there to do, but also are now looking at new technologies without losing track of, of what was there in the past, yeah?

When we started the number of people we did get involved, there so few of us, we felt we had to understand as much as possible. That’s not true anymore. People who get involved now need to understand, they’re more than welcome to understand all of it, but, what’s most important is they learn what they need to learn for the task they’ve been asked to do. So, if it’s about doing a summary of lay reviews, or deciding which piece of research should be decided on and are funded. So, on the funding one you might need to help people understand what it is they’re looking for. Does it make sense? Is this a language relevant and appropriate? Does it, is it being ready to accrue in the right place? Is it secondary care or primary, you know just common sense stuff.

Then they might want to look at the section on patient and public involvement, so you give them just some hints and skills, but often it’s things like advice, have a cup of tea, read them, put them down, go for a walk, have a biscuit, go back with a pencil this time. Because when you’re faced, if you’ve come from just a patient to suddenly reviewing lots of trial protocols, you know, the batch of them can be, do you know, a huge tome of papers to read through, and you go, “What I hadn’t realised!” So, peoples expectations, what they might need to do, so we can do that. If it’s about looking at a particular research trial and helping a researcher, then it’s about, ‘Do you understand what the researcher’s trying to do? Have they explained it properly? Have they defined?’ So they, the tasks become clear. People sitting on clinical studies groups we now say to them, one of the questions apart from what the role is, what the group is about, what it does, what they’re there, what were often saying to them is, “Now, how would you cope if something emotional came up? If they’d said something about your cancer?” So, they might say, “Well actually very few people live beyond five years and you’re sitting there in five years, one month.” So how do you prepare for that? The one for me was, a description by somebody of how they went in to do an operation in the throat, on the tongue for cancer, which meant breaking the jaw. And I just excused myself from the meeting and went out and breathed deeply and went back in. So, you know, it becomes far clearer, we don’t need to explain everything they can actually do.

The other thing that’s changed I would suggest is that we don’t need to physically know it, we don’t have to memorise it because actually that’s not purpose for being in the room. That’s why we have the scientists. What we need to do is ask better questions. Well, what, and [name] from, who was at Macmillan at the time, said, “I’ve got three questions. What’s this about? What’s the burden, versus the benefit? Does it demand too many visits to hospital? And what difference is it going to make? Is it actually going to be used?” If you ask those three questions, you can’t go much wrong.

And Change Makers, which is about healthier lifestyles, and healthier lifestyles in [city name], is about particular communities and those are in white working class as well as black and Asian, and Afro Caribbean communities where they don’t come forward. Because they don’t come forward for their tests, they don’t come forward for their treatments, they are presenting late, and their outcomes are bad, so it’s how we make sure that’s going to change. So I have my feet that I engage through social media with a number of other groups, and I’ve got friends and colleagues who particularly work in those communities, and I’m always fostering those groups that make sure that were getting those voices. The difficulty often was, is we assume that, oh well if we get him as a member of the table, yes we must fight for that, that’s where were going and it’s not, it’s not tick a box. I heard once from, just a wonderful person who said, “This is not to, for equality and diversity, this is about democracy.” If democracy is work, is to work, people from all communities should be able to see their own in those positions of power or in Councils or in committees because it is only when we see our own, and that has its roots right back to the Civil War, in England. Because it is not for the, it is that the voice should be heard, not that the voice should necessarily have power, and that was in the Putney Debates of whatever date that was. [Derek later clarified this was 1642.]

So, getting the voices of those who are seldom heard is not an equality and diversity issue other than it’s the law. It is because we should, and it is about making sure, not that they are a voice on a committee, but that we have checked that their voices have been heard.

There is a stage of having the patient voice and hearing peoples experiences, which is, has not been really touched. There are good examples of it going on, but it is still a new kid on the block in that sense, and that is, how we capture the patient experience of being a research participant. And by that I mean the customer experience. Now that it, you see researchers and you see policy makers turning their heads as if were turning research into a Tesco’s of tomorrow. But there are things that Tesco’s and other companies do that we should be learning from, and one of those is how we actually measure and capture the experience? So, a good one that weve just had recently was the mystery shopper campaign, where we sent some people in and when I say we, the National Institution for Health Research clinical research network was very influential in sending some people in the cancer network, well certainly rolled out a number of people. And they just went, and they went to the front door reception of a hospital said, “Do you do research?” And somewhere we know research was done said they didn’t, and wed given that feedback to Trusts, and some Trust Boards are now looking at that because they’re going, “This is quite worrying. We thought we told people. Weve got a poster somewhere.” And that poster doesn’t quite do it for me. The Medicines for Children network, I thought they were just brilliant they got some young people to do a treasure hunt in the hospital, and they had gone round beforehand and they had actually deliberately put some patient leaflets and stuff about, and they’d put a number on them.

So the young people were not just searching for anything, they were searching now they were told, “Don’t run in the hospital corridors.” So it wasn’t young people chasing and knocking people down. But I thought what a, you know, just inspirational way of getting young people to go and just find out. And of course they fed that to the Trust. So, how do we make more people more aware? Now, researchers who are listening and watching this will be going, “Oh no, we don’t want to raise peoples expectations.” Yes, we do. Because even if we raise the country’s expectations, I promise you, you wouldn’t have a mad rush.