For anyone watching this who’s thinking of taking part in PPI or who has just started, I would suggest taking a very deep breath, letting it out slowly and while that’s going on, thinking, why do you want to do it, and what is it you want to do. And I would actually genuinely say be as specific as possible. I, in my own experience, I knew that I wanted to do it for two reasons. One, I had this moral imperative to put something back because I was still alive after I’d been ill. But also I had this curiosity and it, specifically it was around I said yes to a clinical trial because I wanted to help research. I did not understand the information that was put in front of me and I picked up very quickly that I hadn’t understood what the trial I was on was all about, and I hadn’t understood what I was saying yes to do. So I became very interested in patient information and the issue to me about how clear the information is, but also how receptive the mind is. The timing of that information is also very, very important. So, I was quite specific about what I was looking at. And then things, since then in twelve/thirteen years have broadened out into all sorts of other topics. But, if anyone is getting involved I would strongly urge: what is it specifically that you want to do? Is it to help with the information? Is it to actually look at molecular biology? Is it to improve the services that your hospital offers because that can be a research topic. You can do that by standing outside with a placard and campaigning or it can be done as a research topic depending on what the issues actually are. So it’s just think it through, that would be my advice think it through and then stick to your guns. Play to your strengths and then after that things will develop. After six months, you will find yourself wanting to do a little bit more, perhaps a little bit less, of what you’re doing now and a little bit more of something else. But it does grab you, it does grab you.

What I would like to see next for PPI is two-fold. Firstly, I would like to see a better name for it than PPI. I’ve no idea what that might be, but already PPI has become, I think, just another three letter acronym and it’s too easy, it trips off the tongue. We need to find a better way of describing it. Secondly, I think we need it more embedded in what we do. My personal vision would be of the National Health Service as a national health research service as well. So, research needs to be embedded in the NHS as method of treatment or as a way of treating patient records and patient information. Either way it doesn’t really matter, but you have all that data and you have all those opportunities and I think we need to capture them all. So, that’s across all illnesses and diseases. So, where we have a situation in cancer where very nearly, very nearly a quarter of all cancer patients will participate in research at some point during their treatment. It will be lovely to see that in all other diseases as well. Yeah, one in four patients in the NHS taking part in research. But actually too it would also be nice to say that all patient records and information are stored in a way that’s accessible, that’s transferable where we don’t have different computer systems or different coding systems, and we can actually start sharing data about massive population numbers and seeing what comes out of that, so I, there are two parts to it. PPI, therefore, the future of PPI is simply to become involved in both those processes. PPI itself doesn’t have a future it’s a means to an end. So we have to look at where were going with research. And to me research should be an integral part of treatment and research into data should be an integral part of the data that we already have and PPI then simply becomes part of those things.

The difficulty sometimes with PPI as an acronym is that we forget what it stands for patient and public involvement and I have actually seen documents talk about PPI involvement. I’ve also heard people talk about PPI engagement’, which is an even more curious set of circumstances. But, you have PPI. In cancer, we tend to use the word consumers, consumer involvement, or sometimes consumer engagement. People sometimes use involvement and engagement interchangeably and, as well as patients and the public, we have carers who sometimes want mentions, especially in the mental health, for example. We also have families, who want to be involved not necessarily because they’re carers, but simply because they’re families. We also have situations where some organisations will still have lay representatives. Patient partners, public partners, and so on, and so on. I don’t think any set of words, or any acronym, will ever satisfy everybody. It would be nice to have one understood, acronym or name. I think PPI may well be the closest weve got as the most commonly used, but the fact that it is a set of initials masks what it stands for. I think too there are questions about involvement and what that actually means. It perhaps comes close in some peoples mind to participation, and in other peoples minds to engagement, which to me are two different things. But there may well be people watching this who actually say, “Well all three are the same thing.” So I, we just need to find a better name for it. It won’t be me that does it because I don’t know what the answer is, but we need to find a better and more accurate name and I, yeah I don’t know.

That’s the other thing the use of the academic language, I think, is also linked to this fact that if you want to make an impact with health research, it needs to be published, preferably in The Lancet. Whereas I tend to take the view that, as a patient, if you want to make an impact with a health research, it actually needs to change clinical practice in our hospitals for the benefit of patients and I really don’t care whether theres four, eight or sixteen pages in The Lancet. I even don’t care whether it’s in academic language or plain English. If you’ve actually found something that promises a better treatment for patients in hospitals, then the place for it to make an impact is for patients in the hospitals, not in the pages of a journal that most of the general public would never touch with a barge pole.

Whenever I’ve talked to researchers about PPI and how they feel about PPI, it falls into two categories and perhaps I’ve been very lucky, or very naïve, but it is only two. The first are those researchers who have used it, often used it over and over again, who think it’s absolutely wonderful, and I like talking to them because they’re full of great stories. But the second, and far more common, especially amongst younger researchers is the acceptance that PPI is a good thing. Not just that they have to do it, that’s it part of the process that they won’t get funding if they don’t have good PPI. The ones I meet tell me they believe in it, it’s a good thing, they want help with their research ideas, with their proposals and the question they ask is How do they get hold of it?’ How do we do PPI and where do we find the patients?’

And it’s a very glib and simple answer, but if you are a clinical researcher then the PPI people are out in your clinic and the way you get hold of them is to ask them. And the way to do it is to talk to them, then listen to them, and that is a glib, simplistic answer but ultimately, that is the reality of the situation. For researchers in laboratories it is much harder. For statisticians, for methodologists, it is much harder because they don’t have the face to face contact with patients, but there are plenty of patient groups out there, and there are plenty of hospitals treating patients, and it still can be done. You just have to stop and think, ‘Well actually what do I want PPI to do?’ And that, to me, is the key what role do you want the PPI to play? Then, from that, you actually move into, ‘Well where will I find someone to do that? Who will help me?’ And there are always people around. Just ask the questions and sooner or later someone will come up with a useful answer. It’s a little bit like a research project of its own, I suppose. But that’s the question I’m asked most often, How do we do PPI?’ And I think increasingly there is an acceptance, not simply that it’s now part of the process, but actually it’s a good part of the process, it’s a good thing to do.

First and foremost, I think, the first thing I’ve noticed is that people coming into PPI [patient and public involvement], certainly in cancer, but also from what I’ve seen in other diseases and other areas of PPI work is there is a greater background knowledge that people are bringing with them. It may well simply be that it’s the internet which has helped, which certainly makes information far more accessible. Theres more of it, of course, and so it’s more accessible. You have to use a better filter to actually work out what the sensible stuff is, but also it’s available in a range of formats. There are far more patients writing information for other patients; there are far more lay summaries of research proposals and research outcomes, not enough, but far more than there was a decade ago. So I think firstly the people coming into it have a much better, much higher level of background knowledge, and that’s very, very true in cancer.

If I were to apply to be a cancer representative on a clinical studies group now, which I did ten years ago, I wouldn’t give myself the job if I were interviewing because I actually don’t have enough background knowledge. I don’t have anywhere near the amount that the people I interview now do. I think too there is more of a focus on outcomes again certainly in cancer, but also in other diseases. There is the knowledge that PPI does work, that it does improve the quality of research, that it does keep the focus on patient benefit. So I think there is more of a focus on outcomes not process. Very few people now tick the box “Oh we have to run this idea past a patient representative; go outside in the waiting room, form a quick focus group and ask people to say yes or no.” I’m not suggesting that ever happened in reality. I was part of one or two focus groups that came pretty close to that though. It is much more serious now, and it’s much more focused on having genuine impact. I think the third thing I’ve found, which I, which worries me, is the issue of PPI as an end in itself. Partly these interviews, I think, are part of that process and it does, it does worry me to a certain extent. There is almost a PPI industry building up and people have PPI strategies, and whilst I understand why that happens, I think it’s very important to remember that PPI patient and public involvement is a process, it’s not an end in itself. And I think there is a danger of it becoming that.

When it comes to our, the question of whether or not people can still be useful ten/twelve years after their own illness has ceased, I’m biased because I had a long time after I recovered from my first cancer before the second one hit me, so I’m not a very good example of this. But, I do think people are still useful. I firmly believe that. But that happens in all walks of life. You don’t say someone has suddenly ended their shelf life as a something just because they reach a certain age or at least we shouldn’t. It’s whether or not they can still make a contribution and the beauty of PPI is that there are always opportunities to make a contribution somewhere else. We tend to think in structures and I certainly tend to think and talk about structures, about committees, but actually it’s far more useful to look at the experience and the skills and the talent that people have, and how they translate into other areas. People can still give advice on parenting long after their own children have grown up. Teachers can still teach, even if they may not be teaching geography, to fourteen year olds, they still have the skills of being a teacher, the skills of explaining things. There are things that we all do in life, which we can translate to different circumstances, but I do think, having said that, that you cannot sit on the same body or perform the same function over and over again. We all get tired doing that, we all, our cars all run out of, energy sooner or later the engines die, the tyres go bald so do we. We all need to freshen up every now and then.

I think theres a challenge with PPI in terms of paying people to do it. At the moment there is a situation where we are given attendance allowances or honoraria. Expenses are reimbursed, but that’s expenses or your travel is paid up front someone else books your train ticket, that’s different. I think there is a big problem with paying people because then there is the question around becoming professional and people making a living out of doing PPI, which is absolutely fine if they are professional and good at what they do. But then you become expert patients and to me theres then the question of how representative is a patient advocate or a patient representative who spends all their time doing PPI in order for it to become paid employment. And it doesn’t have to be actually a fixed contract.

You could, in theory, do that now. Many people would argue that somebody in my position is getting pretty close to it. I know how little money I actually make out of it, so I know I’m not. But, certainly it’s there in terms of the time allocation. And so if I were being paid all the time, at a hundred and fifty pounds a day, or whatever, you could make a living out of it. But the reality is that you’re often only paid fifty quid for a day and that you actually have to do a day before in terms of reading a preparation, and a day afterwards in terms of follow-up on emails, and so on. That happens. So I don’t think people do it for the money. I think there is the potential there to do it for the money and I would worry if that were to happen because I think that creates a whole different relationship. At the moment, people do PPI because they are interested in making research better, in adding value to what researchers are doing, and above all else, making sure that the answers to the research question are going to benefit patients. That’s what drives every single person I’ve ever met in PPI. The moment we start getting paid a living wage for it, let alone a decent salary, that will change, and I think that will be a great shame.

I think people who stay in the PPI world for a few years do have a certain shelf life in what they’re doing. The important thing for my background in cancer is that once we have served our time on a clinical studies group, we come off it the same as the professionals do. Now we can go onto another one if we have a particular reason or background that would allow that to happen we can go onto another form of research committee somewhere. Certainly, if weve developed skills and weve had training that’s the logical thing to do, to actually move around. But I don’t think you can stay in the same place because I think you do become institutionalised, jaded, comfortable whatever word you care to use. There are good reasons for moving people on after three years, five years, two terms however it may be measured and I think it’s very important that the patient reps are treated no differently from anyone else. I think too it does all of us some good to shift around just for the sake of bringing fresh pairs of eyes to old situations. All committees need freshening up every now and then, whether it’s health research, or school governors, or running a rugby club, you always need a bit of fresh blood, a fresh approach every now and then. It’s a good thing to do.

But I do think, along with research in general, there is a difficulty with PPI in attracting certain cultural groups and certain socio-economic backgrounds. But I think that’s also reflected in participation in clinical trials as patients and it’s probably also reflected in general awareness about health research. As a social housing manager, which is what I used to be in my day job, these are hard to reach groups anyway for all sorts of things that you might want them to benefit from. They are hard to reach. No sorry I’ll correct that they’re not hard to reach, they are hard to hear. There is a difference. We know where they live, we know the hospitals they go to, they’re just hard to engage.

And have you any thoughts about how we could possibly engage seldom heard people in PPI?

I have often felt that the best way to find the hard to engage groups, is to go to the people who are already engaging them. So I tend to fall back on my professional background in social housing and the one obvious thing to me is to go to those social housing landlords, who specialise in housing particular ethnic groups, for example. If they are a social housing landlord, you are probably, not necessarily but probably, dealing with people from lower socio-economic backgrounds; people who don’t necessarily have full education or qualifications, and you’re also dealing with an organisation that has a relationship with these people they house them, they collect the rent, they do their repairs, they know where they live. So to a certain extent, one would hope they are already engaged, and I think that’s the way forward. There are other people, too, whether or not you can go to an organisation, like Joseph Rowntree, for example, who do the social research, and actually ask, “Can we do something broader?”

There are always costs. There are financial costs and there are also other sacrifices that people have to make. I’m very lucky. I had a good job and I have put money to one side, and I don’t have children to bring up or watch over, so some of the sacrifices and the costs that other people have, I don’t. PPI is usually well reimbursed and your travel expenses and other expenses are covered for you, but nevertheless, we all have to give up time; we may have to take time off work, maybe our annual leave entitlement. There will always be additional travel costs that you don’t expect. Things like telephone bills, printing paper, cartridges for a printer all that kind of thing, you will incur, it will cost money. Sooner or later you’re going to have to buy extra books to improve your reading, or at least join a local library and pay the bus fare to the library to take the books out. There are always little things, but they are little and if you’re lucky, you do get the chance to go to big conferences, so you can always stock up on biros and post-it notes theres a trade-off.

When I first became a PPI representative, I was offered lots of training, and I had lots of training, because I tried to take every opportunity. And much of it made no sense to what I was actually doing. So, I spent three days, I think it was, on a cancer biology course about a year before I joined a clinical studies group and actually started needing to know about cancer biology, by which time, of course, I’d forgot everything I’d learned. So, in that particular instance, timing was everything. It was a really, really good course and if I’d been able to put it into practice, it would have been a great help. I’ve since had a refresher and things are a bit better. What I wasn’t given initially was a course on how to survive on national committees where everyone is representing an organisation, which doesn’t necessarily have the same remit or interests as the other organisations around the table.

My experience of training in PPI now is that there is an awful lot on offer. The difficulty now is knowing what’s good and what’s not so good and, of course, something you don’t know until down the line, what will have the genuine long term impact? My advice to anyone doing PPI is, they may be offered some training to start with, which is good and it’s always welcome, but go away from it once you’ve done it, go away thinking, ‘I need to find just two or three bits of this that I’m going to practise, that I’m going to use, and do it that way. And then once you’ve settled into your role, your job, your committee, your remit, your work whatever it may be after you’ve had a few meetings, or after you’ve had a few goes at the patient information, or a few questionnaires to look at, then start asking yourself , ‘Well what is it I really need to help me do this?’ And I think there has to be that loop of what’s the role you’re being asked to fill?’ And what training do you need to fill that role. With luck most of us will have transferable skills and experiences to help us get started. It’s then, how do you get from the basic level to the higher level? And you don’t know that til you’ve actually operated at the basic level for a little while.

A few years ago I was very, very flattered to be asked to help out with a particular study and actually writing the paper to report on that study, which eventually was published enormously flattering because my name is now there. It’s on a, it’s on a list of people who are published health researchers. And I’m so proud and I wish genuinely my mum had lived long enough to see that because as an ex-nurse shed be absolutely delighted. The process was much longer and harder than I thought it would be and what I never realised was how people agonise over every word, but also how every time I tried to suggest a plain English way of saying things change it from passive to active, for example people looked at it and then thought, ‘But actually this is not the way professional journals publish their papers. There is a particular style that journals seem to like, a very dry academic style. It’s often the way local government reports are written as well. Things happen by magic, no names are ever attached to anything, nobody ever does anything.

We, these results have been reproduced by’, not we reproduced the results. Everything happens by magic. But that’s a style you have to learn and I suppose it’s like learning another language. I wish things were reported in plain English, and it’s a big theme of mine. Let’s have trial results reported in plain English, so that the people who participated in the trial because it’s our results can understand what we have done, what we have helped find out. But this particular journal, it was plain Englished’ as much as we could, and I’m very proud of it. I am really chuffed that just once in my life I’ve been associated with a publication, a research publication. It’s a long process, loads of emails, hundreds of them, and care taken over every single word. And then the footnoting and the referencing that was like being, that was like being back at university and having to cite all the references that I’d read for a dissertation or an essay or something. It’s something I’ve always hated.

I’ve never really given much thought as to why I’m still involved with PPI except for the fact, I suppose, that it’s something I enjoy doing. I genuinely enjoy doing it. And also, more and more often, it’s something where I feel useful. In the early days I really couldn’t see how I was making any difference at all perfectly possible I wasn’t making any difference at all. But even how I was contributing, because wed have a three hour meeting and I’d only speak the three times, and it would be fairly brief. So wasn’t quite sure, and again I think one of the tricks of getting to grips with PPI is to learn that you won’t make an impact immediately, you just have to be patient as all patients have to be. But I think, I think more and more now it’s, I stay involved because I can see that it does make a difference that PPI does add value to research and that research is improving the healthcare and the treatments we offer to patients right across the board. So there is this feeling of being useful and, in my case, of putting something back. My mum spent her whole working life working for the National Health Service and I’ve certainly had great value out of it myself because I’m still here to tell the tale. So you just put something back.

The value that PPI adds to research is in that point about adding the patient perspective. So we can add, I think, tangible value often measured in financial terms or raw success criteria. Will you recruit the number of patients that you want to recruit in the time you’ve allowed for it and in the time you’re funded to do it? If you run the idea past patients in the first place, you are far more likely to iron out those little things that may stop patients saying yes. The obvious things are: how many times do we actually go to hospital? How many blood tests are there? Who’s paying the car parking fees? Little things like that that actually mean an awful lot when you’re a patient, especially if this piece of research is a clinical trial. So you’re dealing with sick people, whose families are having to make adjustments for the treatment anyway let alone the patient themselves. I think too there are, there are other forms of value that can be added. If your research answers a question and the answer is important, then having patients on-board can help you not just disseminate the results, but actually get those results put into practice perhaps more quickly, but perhaps just have the publicity angle raised.

Newspapers always love publishing stories about research, but as the bigger charities are well aware now, they have much more impact if you can stick a patient’s story alongside it. Many of the patient representatives also have their own contacts with charities, who would be delighted to report pieces of research and indeed report research underway to assist recruitment. So that there are the practical things that patients can do, but, ultimately too, the patient perspective should help researchers keep focused on whether or not the question is actually going to be important to patients and whether or not their piece of research will actually benefit patients in the long run. Of course researchers need funding to keep them in jobs and university academic departments and so on need funding for research in order to, that research will improve their academic performance and how that’s measured. But ultimately health research should benefit the health of the Nation, and sooner or later we are all held to account for that. And patients do have this knack of keeping people focused on what’s the benefit for other patients.

My message for researchers or clinicians who want to involve patients in PPI is a curious one because it is to find people who want to get involved because they want to help research I think that’s absolutely fundamental. There are patient representatives who want to get involved with things because they want to correct problems and I’m a patient myself and I’ve been involved with those groups myself and I fully understand that. But wanting to sort out problems, wanting to campaign because something’s gone wrong is a very, very good right and proper thing to do and more power to all our elbows, but, that’s not what research is. Research is finding answers to questions, certainly clinical research is. I think you have to; you have to make sure that the patients understand that that’s what you’re trying to do. It is to find the answers to questions so, on the one hand you do need articulate committed patients that’s true, but they have to be prepared to find answers to questions.

When I first started I had two motivations. One was sheer personal curiosity. I’d started to ask questions particularly about my own treatment and my own experiences that I’d had as a participant on a clinical trial and then later on several others. I’ve been having twelve/thirteen years of treatment now and I’ve had five clinical trials in that time as a participant. So there is my genuine curiosity about health research and about how it works as well as about treatments and which one is better and how we know that. But also too, there is this very personal element of putting something back. In my case my mum was a nurse, so it was drummed into me at an early age that health research generally is a good thing because you don’t change treatments, you don’t improve treatments, you don’t improve peoples prospects unless you do thorough, proper research. She also drummed into me things like the doctor is always right and I have discovered that that’s not necessarily a good thing to have drummed into you, so I didn’t listen to her all the time. But also, I thought theres a moral obligation I survived cancer and was very lucky to do so, but most of us who do survive cancer, we do so because the treatments weve got now are better than they were thirty years ago and that’s happened because other people who are no longer with us have volunteered to do clinical trials. And when someone put one in front of me my reaction was immediately, “Yes of course I’m going to do it, just tell me what I need to do, how I need to do it.” I was very lucky with supportive friends and my local hospital was running the trial, so I didn’t have lots and lots of problems about travel. I was fit enough to undergo chemotherapy, so I didn’t have any long hospital stays to worry about, children to look after all the other things that you have to consider in these situations. So, it was easy for me to say yes. But, personally, my predisposition was always to say yes, it’s always been there.

Do you think you would have got involved in PPI if you hadn’t been ill?

I don’t think I’d have got involved in PPI if I had stayed well throughout my life. It’s something that’s been there at the back of my mind, but it only triggered when I got ill. If it were not for my illness, I’d probably have followed my career through as a local government officer and a school governor and playing rugby as long as I could, and all the other things that I was doing. So it, I think, for me personally, PPI has come because I was ill and because I was on a clinical trial. But it’s not just being ill; it’s the fact that I took part in health research as a participant, which has opened the doors to PPI.

I first became involved in PPI because I was asked, which sounds a glib answer, but. I’d written a diary, like many cancer patients do, and the diary was passed around my nurses, and it went back to clinicians, and it went back to researchers because, I was participating in a clinical trial and somehow it ended up with the Chief Executive of Cancerbackup [woman’s name]. And after my treatment finished she got in touch and said, “Would you like to come and be a patient rep and help us review our publications and steer some of the research were doing into patients information needs?” And from there I’ve just passed from one committee to another and usually when people ask I try to say yes. There have been many times when I wish I didn’t, but I do.

Do you think you would have got involved in PPI if you hadn’t been ill?

I don’t think I’d have got involved in PPI if I had stayed well throughout my life. It’s something that’s been there at the back of my mind, but it only triggered when I got ill. If it were not for my illness, I’d probably have followed my career through as a local government officer and a school governor and playing rugby as long as I could, and all the other things that I was doing. So it, I think, for me personally, PPI has come because I was ill and because I was on a clinical trial. But it’s not just being ill; it’s the fact that I took part in health research as a participant, which has opened the doors to PPI.

I think there are examples now of patient information is the obvious one but there are examples where patient impact generally, in trial design, and how trials are put in front of other patients to become participants, has helped people improve their recruitment. But, more and more often now patient involvement is actually helping out the initial design of trials and how the proposals are actually structured in the first place, including things like blood tests, tissue samples and so on. Again, it can often be the very little things but if you have to take blood samples at a certain regularity, then the way to make your trials succeed is to have those blood samples taken at the same time the patient is having a blood test for another reason, such as their routine treatment. They are such small details, but often researchers can forget about them, particularly if they’re trying to design a protocol that can be replicated across several different countries. That in itself brings different challenges.

Have you been involved in designing research or setting research priorities?

I’ve been involved in designing research proposals to a limited degree, but I’ve also been involved in designing research priorities, sometimes on a national level. The two things of course are quite different, but they are, they’re both eye opening. One of the things I did in terms of a national priority, was a few years ago now National Cancer Research Institute held a conference to talk about its next five year strategy, so all the partners in the NCRI were there, all the people who fund Cancer Research, and lots of eminent professors and so on. And one of the things that myself and one or two other patient reps picked up on was that all the people there were interested in funding research into cancer. But actually, if you go to the public and ask about cancer research, one of their priorities is of course preventing it. Nobody wants to have cancer if it can possibly be avoided and, partly as a result of that conference, what’s now happened is that the NCRI partners, the proportion of money they’ve put into prevention has doubled, which I think is absolutely wonderful, but that was something that we initially raised as an issue and was discussed on a national level. At the other end of the scale, there are the really limited ideas in the sense that it’s limited to the benefit of a few patients with a particular problem. So I became involved in a study that was seeking funding, which was around the issue of people who’ve had lymphoma, which is a cancer that I’ve had, who have had certain drugs to treat them, which I have had, who are current or ex-smokers, like myself; they are statistically more prone to develop lung cancer later on in life. So, what we were looking at was whether or you could design a study to screen’ some of these patients regularly for lung cancer in order to catch it at the earliest possible moment. As it happens that particular study didn’t get funding, so I’ve also had experience of where no matter how much PPI you put in it still doesn’t get the proposal funded and I’ve had to share in the disappointment of that. One day well get there.