We do the wide, it’s a really, really wide range. We have, researchers send us new trials when they’re at the planning stage they send us protocols, they send us patient information sheets, they send us consent forms. They can be circulated around our group and the response is collated and sent back. We also attend meetings and these will be [coughs] trial management meetings, group meetings; they will be trial working groups; they will be meetings of national groups, local groups, tumour site groups so they may be a breast specific meeting. For instance, theres about five of us attend, as full members, of the breast, the UK Breast Intergroup, which meets twice a year. And they are very, very supportive of us and they always include us in the discussion, and actively seek our input at different times in the discussions.

Were stakeholders with NICE. Now theres a lot of work there and we can’t do it all but we can select certain things that we can send comments in about. Were, we have members who sit on different clinical study groups. We have people who are involved with things like London Cancer UCL Partners. We have members on the UK Confederation of Cancer Biobanks. We have two members who set up the Brains Trust, which is a brilliant organisation charity for people with brain tumours. We have members in various organisations so, and they all bring to the, you know, the melting pot. And we learn from each other as well as from professionals. And if we haven’t got the, you know, if one of us gets a request and we feel were not skilled enough in that field, we can send it round the group and found somebody who is better able to meet the need or we can learn more. And I think that is an essential part of the job is actually recognising your limitations and not giving people unrealistic expectations of what they can achieve, but encouraging them to develop and to be brave. And most people now, most researchers, most organisations are very encouraging and very welcoming of lay input, so it is, I think it’s a lot easier but it’s also getting more and more of a responsibility to do it properly.

It’s interesting. It varies quite a bit from study to study. In the fatigue one, for instance, I was part of an initial group, a wide group of patients brought together by the university concerned to sit and do what’s called, you know, the World Café kind of event where wed bounce ideas around about what was important to us about our own experiences of treatment and afterwards. The unit as a whole is funded to look at that bit that’s after, if you like, so it’s not doing clinical research of a very kind of pure scientific medical kind about cancer drugs or genetics, any of that stuff, it’s much more looking at the psychosocial side of things. So that was the kind of the unifying theme, but up within that they had some ideas, but we had lots of ideas as a disparate group of patients who didn’t know each other beforehand, oh but they’d somehow pulled us together, brought us in a room and we started if you like establishing some priorities of things that wed found needed to be done. And this is one of a number of studies that grew, that grew out of that.

Now I’m on the, it’s a funded study, it’s recruiting. How do I know it’s recruiting? Because I’m on the management, what would be the trial, the steering group I guess, trial management group. And what that involves, I guess, is getting updates from the team, going to the occasional meeting. If, you sometimes you might have a view about how something , how something might be improved and if you’re involved at the very early stage, at the thinking, you can say, “Well actually that’s not the language, that is, you know, that here, why don’t you try this. Heres a way of presenting the whole concept that might make it seem more attractive to people.” A couple of us also were, one of my colleagues was videoed and I did an audio, a podcast, as a patient giving my perspective to help in the set up in the recruitment, something that people could click on a website and hear other patient’s perspective and why we thought this was an important area to research. So, it varies from something really tangible like, OK I did a little interview in a podcast to, you know, this sitting on a trial management committee there are lots of those around in this kind of work.

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.

So I went to the meeting and I joined the Cochrane Skin Group and as a result of that I got really into the whole research agenda because knowing as I did what there was or wasn’t out there published as, a studies, randomised trials for vitiligo, I didn’t think everybody knew that, not everybody who had, was a doctor or a scientist was involved in Cochrane. So I thought, ‘Well we ought to publish what’s there so that people know. And I said to, it was now Sir Iain Chalmers, on one of the trips they have congresses, or colloquia as they’re called, all over the world and this was in South Africa. And as a patient I got a stipend; you’re judged, you know you go to an interview and they gave, there were three of us and we went to South Africa to Cape Town absolutely amazing. And I sat next to Iain in a bus going to a wine region for a reception or something and I said, “You know, I’d really like to do a review.” “Yes of course you can,” he said. I’m not a scientist or a doctor.” He said, “Doesn’t matter. We can provide all those people as co-authors but you have the desire to do it and nobody else has, you can be the lead author.” And I looked at him as though he was mad of course [laughs] and then he said, “And when you’ve done it you’ll be an expert in vitiligo.” Which I laughed out loud actually [laughs].

But in one sense he wasn’t wrong because I’m not a scientist, I’m not a doctor but I know a lot about vitiligo, it’s what I do [laughs] and I think the other thing that I do, which came also from my experience as an academic librarian in the science, bio sciences, is what they used to call selective dissemination of information. So you’d know who all the academics were, or the lecturers and everything, and you’d know their interest and things would come in either journals or books and you’d think, ‘Ah Dr [doctor’s name] might like that; Ah so and so might like that.

* A systematic review is a compilation of all the high quality research on a particular topic. It may include a meta-analysis’, which involves collating the data from all the studies and conducting statistical analyses on them.

I’ve even, I even thought up my own proposal for a research project, which got a whole team together. And I sat in this room with all these academics. I could not believe it. There must have been about seven or eight psychiatrists all sitting in a room, and with a statistician and everyone, and all sitting there. And I’m sitting there thinking, Wow.

And I said to the one psychiatrist, I’m thoroughly embarrassed. I’ve got you all here for half the day. And the one psychiatrist said, No, I think this is absolutely wonderful. And we got actually shortlisted on one of them, but then we didn’t get past shortlisting. And I was really, really upset. And I remember the one researcher who had put the proposal together said, Oh he said, Don’t worry. He said, Research for Patient Benefit will be here for years, so we can keep trying. And I just thought [laughs], you know, it was just so lovely the way he said that and kind of, you know. And so it’s on the back burner. But we haven’t finished yet. So, you know, so for as long as, as the Institute for Health Research will be there, my proposal will be on the back burner. So that was lovely. And also I go on courses and stuff and I’m encouraged to do training and, you know, I help out on stuff. And I do have my own specialist area, which is around personality disorders and eating disorders. However – and psychological therapies – however I recently was approached by a professor who specialises in schizophrenia research, and it was quite nice to be asked to, to help out on that. And that wasn’t tokenistic because he was applying for money, but he genuinely wanted my advice knowing that I worked with other mental health service users. And it was really nice, you know, and it, it was a nice feeling. And I also went away and learnt more. And I also got given a great big textbook as well. So it was great.

One of my jobs before I retired was as a teacher trainer, post graduate certificate in education. So my job was to not only set an example, but assess people on presenting information in a way which would engage the audience and would convey the meaning effectively and hopefully permanently; it would stick. So I went to the first of these conferences and fairly critical of the presentation skills of some of the presenters [laughs]. So I said in my lack of wisdom, you know, “I don’t think that was done very well.” So of course next year they said, “Well you can do it then.” [Laughs]. Fortunately it was only a short slot that I was given, but yeah you see presentation skills if you’re going to sell your research project to the general public, theres a way of addressing people at that level, which is nothing like symposia language and it’s a different type of speaking.

I mean, let alone what appears on paper. One of my little jobs was on the ethics committee in North Wales and you’ve got to, theres a lay summary section written specifically for the lay people. Some would be frankly disgraceful I mean is this going to be recorded? Disgraceful. It’s a very strong word isn’t it? But they’d just taken a chunk of their protocol and popped it in, you see. And this cut and paste thing gets my hackles no end. Because if you are supposed to be communicating the purpose and the process of your research to non-specialists then it’s a job which you should take seriously, and not just say, “Well hard luck mate it’s going to get through anyway on merit, so I don’t care.” It is important to get the public, you know, on board increasingly so now that money’s getting a bit tighter, yeah.

I think it’s important to involve members of the public at all stages so that they’re not only involved in the planning and the development of the project but then are engaged in what I think are just as important, in fact in many cases more important, that where possible they’re involved as co-researchers. So, for instance, they may be engaged in collecting data or they may even be involved in analysing data. Now it depends a bit on what the data is but I think the principle is important to say, “How can we involve members of the public in this research?” Not least, for instance, in ways where they’re talking with people who are participating in the research to find out how it went for them what benefits did they get out of it. They should, and again this is going back to communication, should be involved in helping to write up the research, not necessarily, obviously, the technical part but involved in helping to interpret that so that it’s something which the public generally will understand and certainly those who have taken part in it will understand. Then, if possible, to involve them in promotion of the research findings, the dissemination and I put the ‘if possible because not everybody may be willing and able to speak in public but I think it’s important to try to encourage people to do that because the engagement of the public in the research is just not going to benefit the research, it’s going to benefit those people who take part in that they will learn, they will engage and they will acquire new skills, different skills; how to talk with researchers, how to persuade researchers, how then to go on and help them write the research project up and learning skills in how to disseminate because what they will do is be the best advocates of the research as far as the public is concerned that you could have because they are talking about what’s happened to them to people who , like them, and the more you can encourage people to be engaged the better. It’s going to be helpful to everyone and I think that not only will they benefit intellectually and socially and in confidence, they’ll have fun and just by learning.

The dynamics are interesting between the three groups were very different really. And very different make up. The trial management group at the Medical Research Council was a group of probably half a dozen clinicians and a couple of statisticians committed to solving a particular problem within the lung cancer world. Very welcoming and easy to work with.

The National group for the Lung Cancer Clinical Studies was a different group, because I’d been invited as an individual and I don’t think that the majority of people sitting in that room had expected even a patient to be there. So I had to make a place for myself as a, as a lung cancer patient, but also try to convince some of these people that I had a place at that table. And I think I managed that. I was, I worked for that group for five years until my time was up, and I had to be recycled.

The, the local group is the one that I always found to be the one that kept you anchored in the real world, because at that group there were about 30 members of cancer patients from all different types of tumour types within that, within that room and the real spectrum of people form ex coal miners, steel workers, all the way through retired professionals, prostate cancer, breast cancer, ovarian cancer, myeloma.

But it was a chance to listen to discussions that, that real people, who had not got a clinical training listen to their experiences of cancer, and, it was always interesting then to take their views with me, when I worked on the national groups and worked for the Medical Research Council and if any problems or questions cropped up when I was on the national groups, I could go back to Sheffield, talk to my pals at the Consumer Research Panel, get their views and that helped to, I think to make my input to the national groups more robust and more meaningful. So I wasn’t just talking from the angle of David Ardron, carer for a lung cancer patient and a breast cancer patient in South Yorkshire. But talking as a representative of a wider group.

Well I probably accidentally developed a second career in PPI. So I quickly got involved in more of the governance issues. So one of the things I really enjoyed was I was asked to become a member of an advisory group to quite a big research collaborative, which was doing research into supportive and palliative care throughout the UK. It was a collaboration between three big research universities in the UK and they had an advisory group set up. So I was involved in that, a member of that group. That was quite a strategic role because you were talking to the kind of chief investigators at all three big universities about their way forward and about their strategy and about how they were collaborating that was very interesting. So that was probably a more strategic level, very much about governance. And round about the same time, slightly after that, I was invited to join the National Cancer Research Institute Board sub-group for a clinical and translational research, which is a UK body of course; and that’s pretty much the top table of cancer research in the UK, just one level down from the Board. And we met there three times a year and that was the great and the good of the cancer research world. And I had the opportunity there to talk about really the cancer research agenda and the priorities, the initiatives and the things that were going to get funding, things that were going to get attention. And that was one of the most interesting roles that I’ve had, although it was one of the most difficult from a PPI point of view, it was one of the most difficult to make a real contribution because of the way it was structured, the way it was organised.

Can you tell me a bit more about that?

Well they didn’t meet very often for a start; they only met three times a year. And before we met we were issued with all the Board papers to read, which were always interesting, complex, some of them quite technical. And we were asked what was good about it was we were asked what we wanted to talk about at the meeting. So you are given a chance to reflect on the papers and then come up with questions or comments, and by and large we did that there were two of us sitting on this board by and large we did that and we were always asked what we thought, that was good.

But we always felt that a lot of stuff happened in between the meetings that we didn’t really get a chance to see what that was so. And maybe that was quite a natural thing. Maybe that was just, that was everybody elses day job, so they just got on with it after that and actioned the points and developed the initiative and progressed the matter, whatever it was. And we didn’t really get another update until we went back four months later and it looked as though an awful lot had changed and we hadn’t necessarily seen it change. And that was probably a little bit frustrating because you, sometimes you felt as though you wanted to carry on the meeting outside the meeting. You wanted to actually to revisit the subject and go into more detail or contribute more, and you weren’t really, it wasn’t easy to find the way to do that often. So while it was really interesting and it was a great privilege to be involved at that level, it was quite hard to make a really telling contribution I felt.

The East Midlands Committee for the National Institute for Health Research and the particular group, the Research for Patient Benefit I’ve been a member for just over a year and this is taking the involvement in research groups a stage further. So I’ve talked about how interesting and really exciting to be involved in, not just in taking part as a volunteer in research, but going on to being able to contribute in committees about proposals for research. This is the next stage where those researchers are submitting applications for the research funding from the National Institute for Health Research and as a member of that group, a lay member because it’s mainly very important clinical researchers and statisticians and those with specialisms relevant to this research, lots of professors, but there are one or two of us who are lay people and what we do is read and report on those applications that have been submitted.

We obviously don’t do those which we ourselves have taken part in because we have to be detached and make judgements based on our views of those documents. So you, you then see what the researchers are trying to convince the committee of the value of what they’re proposing and so you will have , again, research which is, is by definition not only new but is sometimes doing something which is breaking ground which, for a lay person, you’re surprised for two reasons: 1) that somebody has made, that there is a possible connection between doing this and the result, and also sometimes saying, Well it’s surprising that that hasn’t been done before, but you know why it hasn’t been done before because the originality is that somebody has just thought that, well there is a connection there; and it is an, an impressive committee to be on in that you realise the breadth as well as the specialist understanding of these clinicians and the way in which they can be detached about the work of their peers where they’re looking at people; [heavy rain in background] and they know by name and know the quality of the work and analysing what they’re doing and saying that this , this has merit or doesn’t have merit.

As I said at the time, I was teaching. And what happened in fact was I was supervising a dissertation of a student and she was a nurse, and she was doing a degree in practice nursing, she was topping up her qualifications and I was supervising her. And she wanted to do some qualitative research on why women didn’t go for cervical smears.

And I thought it was a fascinating piece of research, and you had to do it qualitatively, you couldn’t possibly do it any other way. So she prepared her research application, goes off to the ethics committee and comes back in floods in tears because the ethics committee was very dominated by sort of clinicians and they didn’t actually think that qualitative research was worth anything. You know if it wasn’t quantitative, if it wasn’t an RCT [randomised controlled trial], forget it. And I was so cross about this and I thought, ‘Who are these ethics committee? Who do they think they are?’ And at the time I was a member of my local community health council and I went to a meeting the next week and the ethics committee were asking for lay members. So I thought, ‘Right, I’m going to get in there and teach them about qualitative research and why it matters. And that’s how it started, yes.

Brilliant. And so what did that involve you doing at the time?

Well, there was monthly meetings and before the meeting, you would get all the research applications that were going to be looked at that meeting. You would read them through, you would make comments on them and then go to the meeting meeting would be two or three hours, and it was basically going through the process to see whether or not the research application met the ethical standards.

And what was the dynamic like with the other researchers, the other clinicians, the other members of that panel?

Yeah. Yeah, that was interesting, because you think you had to, you had to establish your credentials. I think when I started, and we are going back to sort of about the mid-nineties, I think it was much more you were the token lay person. There was perhaps two or three lay people, but you were there because you had to be, and I suppose once you’d established yourself, I think it was OK, but at first they just thought you were going to talk about the patient information sheets and that was really your job, to see if that was clear enough. But over time they realised that you had other things to add about the quality of the design, about whether the outcomes were actually relevant and that if you were looking at it from a patient perspective, you could see outcomes in a very different way from a clinician. So, I think you had to establish yourself, but having done that then the dynamic was fine, then you became a member of the committee and in fact I became Chair of that committee.

I’m quite clear in my own mind that I won’t do other peoples jobs for them. You know I’m not I’m a volunteer, I’m not paid, I cover my expenses and that’s all I really want from it. But I will do anything that I think is reasonable and possible so when I was asked; when I volunteered I wasn’t really, I was, I volunteered to take on-board the PPI research film for the [place name] Stroke Research Network, it was something that came out of a meeting that I agreed that I thought I could actually deliver a film on getting involved in research and what it means and to highlight the local research in the [place name] and I was lucky, I called in some favours from all of the people that I’d come across and everybody said yes and that went live at the end of 2011 and The Guardian picked it up. It’s been on the NIHR website for a while, my research journey and I’m very proud of it. I’ve been to a few conferences on the back of it [laughs] but it was just a reflection of me, my personality, always wanting to be busy, always wanting to push myself. And because the people that I involved in the film recognised that, everyone was willing to be part of it. Other aspects of my PPI work involve being a, a supporter of the network, pushing the boundaries of research and research informed government decision making things like the NICE guidelines and I’ve now got back my public speaking skills so I’ve participated in several national and local conferences doing a variety of things. That started in 2011 when a friend of the family was heading up the introduction of the national leadership fellowship for the NHS and it was being launched in Westminster in May 2011. And I was asked if I was, felt I was in a position to comment on my observations of good leadership and management as a consequence of my stroke and I said I could probably put something together. Then I was told that I’d be following on from Andrew Lansley and that clinched it. He was having a really bad time back in May 2011 and I thought, ‘I can’t do worse than him,’ [laughs] but then he got the, he got the push so maybe the Sports Illustrated effect is following me, I don’t know.

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.

OK so INVOLVE is the national advisory group, public involvement in research so that’s not just health research it’s health and social care more broadly, and it’s now part of the national institute for health research, so it’s part of NIHR and theirINVOLVE runs as, so theres a small group of staff who, you know, are paid and it’s a director and about, I don’t know, there must be about eight or ten of them or something. But basically it’s a membership so you apply to become a member, which I did probably eighteen months ago and it’s, you know, it’s, so they had a round of, they advertised for members, so they wanted to attract some new members. Quite a lot of people applied and you know theres an application and you know recruitment process basically. So, and I was fortunate to be, you know, to become a member and I guess, I mean for me that’s really good because it means that you; so and it works so there are two or a couple of meetings a year, maybe three, never remember that, and so it’s an all-day thing in London and once a year theres a two day symposium and every other year they have this three day conference that they run which is all about public involvement in research.

And what’s good about that is that, you know, so they bring issues and changes mainly these days, changes to the infrastructure, you know, NIHR changes, theres going to be a new the latest thing is this academic health sciences network that everywhere is going to have, you know, and how public involvement needs to be part of that and, you know, so theres, so they bring issues but the members can also raise issues and they have work streams . So I’ve been involved in a working group and they are developing; so they’ve got a website with lots of guidance on it which is accessible to everyone but this bit of the website is to create a map so that organisations or groups that are specifically interested involvement in research can be on the map and that you can find, you know, so that, so you could find it by your, by health topic or by area.

So it’s really a way of trying to link people up better. You know so I’ve been in a project that’s been involved in a project that’s developing that bit, the website. So theres actual bits of work andbut you know we have these meetings and people can bring up issues. Effectively it’s a way of I suppose people who are professionals or interested in this area, you know, as a quite strong part of their professional life to come together and they’re very clear about there has to be a, you know, quite a large number of service users and carers and members of the public more generally, and it’s, it’s a lovely organisation, it’s really friendly, it’s really welcoming, it’s very interesting and I really enjoy it every part of it, it’s great.