Derek
Derek has been a patient PPI representative in health research for about 13 years. He got involved after recovering from throat cancer.
Derek is married. He used to work as a teacher before becoming a freelance public and patient involvement (PPI) training facilitator. Ethnic background: White/Scottish.
More about me...
Derek was diagnosed with throat cancer about twenty years ago. Around seven years later, he attended a meeting about publicising research and he asked why the researchers waited until the research had finished before they started to involve patients. After this discussion, he was invited to join a national cancer research committee. He said he had limited knowledge of science and research, but he joined because he wanted to help increase the number of cancer patients participating in clinical trials as part of their treatment. Seeing this number increase is partly what has kept him involved as a patient and public representative for the last thirteen years.
When he started doing PPI, Derek realised that other members were often patients who were also clinicians or researchers. Whilst their input is valuable, he thought it was important that patient members from other backgrounds were involved so researchers could hear what it was like for those who knew little about research. He said it was also important for PPIs to think about this issue too, so in another cancer group they included a member who didn’t have cancer. Derek and the other members of his group set up their own programme of training that included the things they wanted to learn about. This was later developed into Building Research Partnerships, a UK wide generic PPI training course that aims to bring people together so they can learn from each other. Derek thinks the generic nature of the course is one of its strengths because people shouldn’t be pigeon-holed into just working in research on one condition, and they don’t need to be trained in every aspect of research because they can access further information using the internet and apps on their smartphones.
To get involved in PPI, Derek thinks people should draw on their personal experiences, attend training and believe that this is something they can do. They should get their foot in the door and then find what aspects of research they want to be involved in. Derek also thinks PPIs shouldn’t aim to be representative of all patients, but they should stay in touch with other groups, so that what they bring to research includes the views of others.
When Derek is invited to work in research, he thinks about the context, purpose and impact of the work. He needs to know what he is being involved in, what the research needs from his involvement and what it is the work is trying to change. He also thinks it’s important to reflect on what PPI added to the research. He sees PPI as part of the quality assurance of research and understanding what it adds will lead to what he described as “best quality research which can be quality marked”.
Derek said that getting involved in PPI has made him a better patient because he is now more interested in his health and in health research. He thinks this is how tomorrow’s patients will be because they will know more about research and will want the care they receive to be based on evidence.
Involving a wide range of people is fundamentally about democracy and power for Derek.
Involving a wide range of people is fundamentally about democracy and power for Derek.
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.
In his national role Derek has supported a ‘mystery shopper’ campaign with people checking if hospitals are telling patients about research opportunities.
In his national role Derek has supported a ‘mystery shopper’ campaign with people checking if hospitals are telling patients about research opportunities.
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 people's expectations." Yes, we do. Because even if we raise the country's expectations, I promise you, you wouldn't have a mad rush.
Derek runs training. People don’t need to know all the technical detail, but they need advice on how to do specific tasks, ask the right questions, and cope emotionally.
Derek runs training. People don’t need to know all the technical detail, but they need advice on how to do specific tasks, ask the right questions, and cope emotionally.
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, people's 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 we're 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.
Derek would like to see more online learning, but some things are best learnt by doing it, meeting people and asking questions.
Derek would like to see more online learning, but some things are best learnt by doing it, meeting people and asking questions.
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?
Researchers don’t always know what they want from involvement, so it’s important for people to get this clear and ask for training.
Researchers don’t always know what they want from involvement, so it’s important for people to get this clear and ask for training.
Derek had no scientific knowledge at all. Involvement needs ordinary people.
Derek had no scientific knowledge at all. Involvement needs ordinary people.
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.
Entering a room full of senior academics can be intimidating, but they may not mean to exclude you. Derek offers advice on how to break the ice and ask questions.
Entering a room full of senior academics can be intimidating, but they may not mean to exclude you. Derek offers advice on how to break the ice and ask questions.
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.
Derek puts many hours into involvement, often unpaid. But if people want him to take part in a demanding committee as an equal he expects to get an honorarium* or to be paid for it as work.
Derek puts many hours into involvement, often unpaid. But if people want him to take part in a demanding committee as an equal he expects to get an honorarium* or to be paid for it as work.
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 we're moving in to somewhere where honoraria payments in line with INVOLVE’s 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.
Derek is now healthier and better informed generally. He feels able to ask the right questions about his health and the evidence for treatments.
Derek is now healthier and better informed generally. He feels able to ask the right questions about his health and the evidence for treatments.
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 people's lives, and too often we forget that last part. But, there's another element that doesn't get touched into, involvement that changes people's 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’s fine to involve white, retired, middle class and educated people, but they have a duty to say it’s wrong if they’re the only people involved.
It’s fine to involve white, retired, middle class and educated people, but they have a duty to say it’s wrong if they’re the only people involved.
No-one expects researchers to represent other researchers. Individuals can’t be representative but they can work hard to find out what a wider group of people thinks.
No-one expects researchers to represent other researchers. Individuals can’t be representative but they can work hard to find out what a wider group of people thinks.
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?"
It doesn’t matter if people are passionate about one particular cause as long as they become part of a wider discussion too.
It doesn’t matter if people are passionate about one particular cause as long as they become part of a wider discussion too.
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 we're most interested in is working in partnership and getting all those voices together. And once we're 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.
Derek has seen the number and range of people involved in research improve. In the early days the same few people had to do everything.
Derek has seen the number and range of people involved in research improve. In the early days the same few people had to do everything.
Derek explains how patients can change the design of studies by bringing their experience to the table.
Derek explains how patients can change the design of studies by bringing their experience to the table.
It would be interesting to test the impact of involvement by trying to recruit for a study using information sheets designed with patient involvement and without patient involvement.
It would be interesting to test the impact of involvement by trying to recruit for a study using information sheets designed with patient involvement and without patient involvement.
Patients who are involved and researchers need to keep a record of the impact throughout the trial. Patients who are involved and researchers need to keep a record of the impact throughout the trial.
Patients who are involved and researchers need to keep a record of the impact throughout the trial. Patients who are involved and researchers need to keep a record of the impact throughout the trial.
The next thing on the agenda is developing lay people to work strategically at national and international level.
The next thing on the agenda is developing lay people to work strategically at national and international level.
Derek gets irritated by researchers keeping ‘their’ lay people in silos. There should be a national register of involvement opportunities so people can spread into other areas.
Derek gets irritated by researchers keeping ‘their’ lay people in silos. There should be a national register of involvement opportunities so people can spread into other areas.
We should have a national register where people log on and say, “Here’s what I’m interested in, tell me about the trials.”