Well as I said the incentive may be that you’re more likely to get a grant, a successful grant if you have that as a very active part of it which is more or less required. But obviously the incentive would be; the main incentive would be that you’ve got to a meaningful study which is going to get to the truth of a condition and is going to have the best possible treatment for patients. And so that can, that’s always the. Any researcher who is interested in finding out the truth about a condition, what the real nature of it is. And any researcher, especially a clinical researcher’s involvement, and treatments, wants to get the very best treatment for their patients. So I think that if you, if those two things are there then one can’t really argue.

And so I think that, I think grant giving bodies see that as just a sensible way to ensure a high quality research. But there is an element where, you know it is maybe a reaction over the last three or four years to a general movement that patients must have a stronger voice in their treatment; in research, in whatever; in the whole areas of activity the public need to be, have stronger representation. I think this is one of the things about the last five/ten/fifteen years is that there; the voice of the public could be heard is now partly through technology is something which is much more there, much more in evidence.
[Sirens in background]

So given that it’s a requirement for funders?

Yeah

Is there a danger that some researchers might just do kind of a tick box type?

Well I think that that’s it but I think the funders will probably be aware of that and I think that ; I think that they would often be quite specific in their requirements so there would have to be a panel, often a, you know the advisory panel would consist of three or four patient representatives. So I think it would be difficult for researchers just to get it off as a tick box sort of thing yes I’ve done this; I’ve done that. And I think that, I think that if you have patients on an advisory panel or patients who are representatives, then by, then they may be very vociferous or they may not, so that maybe vary from one to the other. So I think it’s, it’ll be a bit difficult to just to avoid any significant involvement just by ticking some boxes.

So can you tell me a little bit about how you came initially to involve people?

I think it’s an interesting one isn’t it because I think its come much more on the agenda in maybe the last maybe ten years or so. And I think, I think it’s been, it’s been that kind of like, that sort of question on, you know, an ethics form and I’m sure we’ve all written these terrible responses to it saying, you know, “Oh yes and I talked to two people and whatever.” But I think that kind of started me thinking about it. I think I was always kind of interested in, you know, the sort of, I guess a power balance really that I was often going to talk to people on really sensitive issues you know about their health, about it affects them personally and everything else. And actually I sometimes, I personally was kind of questioning is this right sometimes and, you know just working within the system as it was. But I think that kind of attracted me I guess to kind of moving into this area because I was, I don’t know, slightly getting more uncomfortable that I was kind of going in and sort of talking to people about really, sometimes really sensitive issues. And obviously they’re giving willingly but actually could they have more of a say in what I was asking and that sort of thing. So I think that’s kind of why I did.

So, anything which means you’ve got more work to do could act against it, but equally that’s the cost that it might take a bit longer for each thing that you do and it might, yeah so it might take a bit longer; it might cost a bit more but ultimately, the benefit side of it is hopefully you’ll be more successful.

So, ethical approval, if you involve patients and the public, that’s not the reason for doing it but you’ll sail through ethics as long as your study is well designed. But, you know if your study is well designed which it should be if you’ve got patients and public involved because they should ask; they’ll ask elephant in the room questions and it will mean your design will be better, but then it will get through ethics more easily. So, there’s a benefit there; it’s not the reason for doing it but it’s a side benefit. So yes, its swings and roundabouts, it really is.

So in other words it’s no good at getting everything right after getting the clinicians to tell people to do the right thing because a lot of the time they aren’t going to do it and we would say that’s partly because we can’t give them the information they need in a way that makes sense to them to let them make the right decisions. Plus of course quite often the decision the clinicians think they should make aren’t right for them but that’s another story. What I’ll use as an example, we are really interested in children with cerebral palsy, one of the things that’s really makes life very difficult is if you have cerebral palsy affecting your legs it can increase the likelihood that your hips will dislocate and if your hips dislocate it’s very difficult to walk and it’s one of the major problems we have. So there’s been a big movement that if you diagnose cerebral palsy early in kids to try to get them to be, to put them to kind of sleep systems that hold the legs in a position that make it less likely we think that the hips will dislocate, that’s the theory, huge enthusiasm amongst many professionals.

All the research, early research all the early discussion was focused on the question of hip dislocation, well of course the point is who is going to put the kid into the sleep system, it’s their parents. So then if you talk to the families as we’ve done they say yes okay we want to know because of course we care about hip dislocation but, you know, if you’re going to strap a child into something every night what do you actually want to know about. Well the truth is you want to know about pain because you don’t want to hurt your child and you want to know about sleep, does it stop them sleeping.

And unless you do the research in a way that captures those things how on earth can you have a sensible discussion with the families. And so that’s again a long way of saying the simple thing and the simple thing is that we said when we bid for the CLAHRC that we would involve all these three groups in everything we did from the beginning in deciding what the questions were and shaping the way the questions were done and then in helping us decide what the implications were and how we would help people change. So we’ve been committed from the beginning the big crunch for us was that so when we made this bid we set aside about 10% of the grant for public engagement.

Yeah, the key benefits I think is actually, is one of the things is, the project should look better. You know you should be able to say, “We’ve shaped this project with patients in mind.” We’re doing one at the moment which, you know we’ve shown it’s feasible, because in our pilot and with our patients, we’ve worked to make the pilot feasible and pragmatic. It worked. And when we go to the funder for the bigger trial, we’re going, “I thought we’d use all this; and actually we used all this to inform the design.” And it’s really nice when they come back and say, “Well actually it’s exemplary what you’ve done in the PPI section.” And we think, ‘Yeah actually we feel much more confident we can use the NHS’s or the NIHR’s money in a cost effective way to do a trial that’s already shown to be feasible. What we want to show is should we implement it now. And we’ll continue to use the same group throughout the whole trial, and using that group then to think also if you’re going through, ‘Well if this is going to be effective how do we implement, where do we go?’ is another benefit. So, yeah there are benefits in many areas.

So I think that needs to be made possible for people to have some sort of voice. But it doesn’t replace face to face contact and by being cheaper and more efficient, what it should do is free up some resources to reach people, reach out to people who aren’t necessarily comfortable or able to participate virtually in our activities that we set up. So there is a place for community based meetings which have a very clear purpose, and, you know, those might be focus groups or there might be groups that are already existing that we, if you like, tap into for a particular purpose. So there’re loads of groups going on out there for mothers and toddlers, mothers and babies so what a brilliant opportunity for a researcher to go and talk to that group, you know, for ten minutes at the end or the beginning of their meetings and say, “That’s what we’ve been doing, this is what we found how does that sound to you? What do you think about it?” It’s not, you could be cynical and say, “Oh it’s you know, it’s like, it’s no more than market research.”

On the other hand I think reflections from people outside academia and outside health services be really helpful in framing messages in such a way that, that they have more impact than in a way that we traditionally present our work. So I think that would be really helpful. And who knows, one or two people might become interested enough to join the platform and become part of more formal participation and involvement groups. It just develops the communities capacity to understand and respond to the importance of health research and health services – you know, maybe value them more, value their health and value preventative measures more. Because that’s, you know, prevention is a really difficult concept for a lot of people, not just minority ethnic groups, where there might be a much more limited history of prevention in health promotion. But, you know, lay understandings of health, you know, lagged behind a little of the scientific knowledge about what can be done to improve health and prevent illness; and promote well-being really. And I think that’s what we’re after, helping people to thrive in their communities and their lives where they’re comfortable.

I think originally it was, and it still actually is, about who owns knowledge, who’s in charge of the knowledge production and therefore biasing it in a certain direction. That, to me is like the core of it so, up until now it’s been politicians and academics and I think that needs to be challenged. And so it’s about the questions that you ask; topics that you choose; problems that you want to solve. In fact I just heard this morning about the Ebola, one of the scientists working on the treatment for Ebola, she was working for a charity in the US and she, you know the drug companies wouldn’t fund that because there’s no commercial market for it but they did receive funding from the military and the state because I suppose in terms of aid and in terms of national security in certain countries, in certain regions it’s important as we are seeing right now. And I think yeah that’s it. Whereas, you know in hard sciences you can get those back kind of funding. I mean we’re talking, in her case, millions and millions of dollars. But in terms of social science and public health and education it’s very hard to get funding that doesn’t subscribe to the kind of perceived order of truth. If you look at children, young people for example, their value is always as future citizens, productive citizens etc. etc. So research looking at what it’s like to be a child here and now isn’t prioritising that framework. So yeah that’s what I where I was coming from.

But as I said it’s very unlikely that the difference is made on the actual scientific protocol because that’s not the remit. However, for instance when the Alzheimer’s Society monitors come to vet our research, I have trained my PhD students working on that project to talk about their study in a way that people understand rather than pretending to understand the jargon in a five minutes conference talk. This is an incredible bonus. They have to answer questions about, “Sorry what is it that you do?” which is a bonus. The other aspect is that carers may add their own experience about the symptoms that you study from what they witnessed with the people they cared for. This doesn’t change your paradigm as such but it may add layers of understanding of what you’re doing. Sometimes it reassures you that what you’re doing is worth its while because they say, “Oh yeah this happened to me,” and sometimes the way of the different aspects of your research might change according to the enthusiasm or the frowning you receive from them. And most of all it has been a pleasure.

And do you ever feedback to them that, you know, you made a difference to my research when you said this or?

We do, we send the formal forms, but also we develop a personal relationship and so they show interest, real or not, they show interest and we are very happy to share. It’s gratifying. But as I say it’s very rare that you change your scientific paradigm because that’s not the dynamic of this encounter; you change the scientific paradigm if a professional researcher, a statistician, whoever understands the paradigm and says, “Look its better if you change this.” With the involvement of patients you change the way you express your questions, the way you frame it. You put things into context, into real stories. You see whether what you’re doing has any impact in the mind of people who lived through the turmoil of having a disease or having cared for somebody with a severe disease.

The benefits I guess that’s sort of, that broad reality check thing; so nice interesting people and a lot of the benefit comes not so much from the formal discussion about a particular piece of work they’re involved in but a more general chat, insight into their life stuff which is maybe outside the direct scope of what we’re looking at anyway puts ideas into your head and you think, ‘Mm.

And occasionally there have been cases where someone’s picked up on something, you go, “Ooh yeah good point I forgot to take account of that in this thing I’ve just written or…” So yeah there are certainly some examples of those things but not that many to be honest. But also I guess it gives you a sense of confidence that, if you’ve, in terms of interpretation of material and also, you know, writing up an information sheet or a plain English abstract or something, it is your people there to check it with and you think, ‘OK they may not have changed many words, they may just have said it’s fine’ but that’s a useful thing, that’s an endorsement.

Yeah so yeah I think don’t abandon it, that’s for sure for all my reservations.

And how much is it something that you want to do?

Mm about sixty percent I want to do it. The bits of me that don’t want to do it are the kind of, ‘Oh god I’ve got to be polite to people when I’m not in the mood to be’ [laughs] all that kind of stuff. And this sense of oh I’ve got to, there’s a word for it. When you’re sort of smiling and endorsing one way of doing something and inside you’re thinking, ‘I know this is a waste of time,’ or pretending something is true which isn’t, I feel really isn’t true and that’s, I’m giving you very mixed up response here aren’t I? But that, no on balance I think, ‘Well kind of, it’s a nice thing to do and it might make a bit of a difference but I don’t think it makes that much difference. But the public message we have to sort of endorse and support is, ‘it’s terribly valuable and important and makes a massive difference. So I think that to sort of disjunction between what I think inside and the kind of the public story, I feel uncomfortable with. So that’s one reason for, yeah the reason for my forty percent oooh don’t make me do it.

I think it depends on what’s being researched. I think some things, kind of really early phase laboratory stuff, I think it’s harder, would be harder to argue it in terms of funding and, you know other resources as well, personal resource. But I think, you know, anything kind of you know, sort of anything else really I think is kind of fair game to be honest. I think it really does, I think it gives insights that you just wouldn’t and you know, you forget how I mean I’ve talked to a lot of people in my career but you kind of, you forget how kind of institutionalised you get as well. And actually you know, you, how you know, you occasionally lose your own real person-ness if you know what I mean? So I think it does add that and it does add the kind of so it’s a different take on things but also an opportunity to make you think differently as well. So people say, “Oh there’s a new insight,” but actually it’s what you do with that new insight as well, and I think if you’re able to do something on the basis of that, then I think, I think that’s, you know, that’s great. And we sort of you know do it on a minor level when, you know, sort of with all the, you know testing questionnaires on people and, you know, information leaflets and stuff because you do perceive things differently but, you know it’s taking it one step further for me to, you know think about actually how you approach the study overall as well. You know so there’s that that’s a definite benefit.

For me there are more benefits than challenges and I can see, you know, not just in my area, but because I work with grant panels I can see that the benefits that a lot of, you know, that a whole wide range of areas get from it. It’s a difficult tightrope to walk because, you know, politically you can’t say, “I think this is rubbish,” or, “I don’t believe that.” But I mean from my point of view, we do get so much benefit from it. I get so much benefit from it just as I said, you know, for me it’s that , you know, we, as a clinician you get a real buzz from having cured somebody you’ve, I don’t know, you’ve delivered a healthy baby where it might have died. You get that kind of buzz every day. As a researcher, our positive reinforcement occurs over a much, much, much longer scale and so I get, I get my tiny bit of that positive reinforcement from my PPI groups. And so, from that point of view, I don’t want to stop doing it because that’s the bit I get, you know, that can sustain me through the year. In fact now I’ve got two of them it only has to sustain me for six months so that’s good.

I mean the answer is yeah I would say that, it makes you feel good about what you do. I mean I’m, I’ve been one of those fortunate people I come to work with a desire to come to work because it’s fun and I enjoy it but like many people I like to feel that what I do is useful and the more engagement I’ve had with members of the public the more A) the more fun it is but also more useful I feel the stuff we do is. Because I believe that we’re actually doing research that may make a difference one way or another and you know, you can’t feel better than that.

And indeed I have to say that I spoke to you earlier about having had some of the members of our family faculty from, you know, [research unit] spontaneously talking at a, a meeting with trustees from the charity which moved me to tears because of the positive things that they said. And that makes you feel good about your life, yeah.

I think for me, it makes doing the research far more fun. I mean fun’s a huge part of the way we go about involving people – you know, people don’t come along to be glum.

I think families like working with us because we try and make it a convivial environment; we have a good laugh and treat them as experts in their own lives and –

So I think there’s a big impact for us, it makes it all very real and meaningful and, like I say, fun. The most amazing impact is seeing how; hearing some of our parents talk about their experience of being involved with us. And that’s very moving really because they’ve often been quite disempowered through becoming parents of disabled children and they had significant struggles and hearing them talk in presentations or even on TV recently, you know, about how being involved in research has really helped give them their self-confidence and being, you know, feeling like they make a difference to for the benefit of other families and, you know, it’s amazing.

I think, I feel like because it’s now something that I sort of, I would say I feel passionately about it and yet, not because I think it does automatically lead to better research but, because I think it’s this issue of transparency and the issue of where one is meant to be for the public so they should be involved and I do feel the more I’ve got involved in it I feel like it’s not being given a fair crack of the whip actually so, partly I think like well you know, before we debunk it as we claim we will, then we need to at least do it properly. It’s a hard one. As I said I’m lucky in that being on a Fellowship I have some freedom to kind of pursue things and it’s still, it’s fashionable enough that it’s looked at well, OK carry on with it because it looks good on your CV you know people like to see that; funders like to see that. I don’t think there is though the kind of support to do as much with it as I would like and to do sort of more thorough stuff with it.

OK so for me I suppose most of the benefit. Well I mentioned briefly a benefit of, you know, if I’m really; if there was something that I’m not sure, I didn’t really know what outcomes to focus on. Having a group of people where you know that they have experience and know what they’re talking about. To be able to ask them what do you think? And that kind of thing. I think they really added a lot to the research, not every aspect of every project we had going on but where they could add it, they did. It was also, you know, really fun and really nice to be able to actually talk to people and, you know, chat with people and the meetings sometimes were difficult which I’ll come on to in the costs. But, mostly it was a much more interesting part of the job rather than just sitting at your desk all the time, on your own and, you know, particularly in terms of having ideas for workshops and conferences they were fantastic some great ideas came from that parent group particularly for workshops actually where I would just probably do a presentation, you know. Even though I think that’s where my mind automatically goes, if you’re doing it we’ll get PowerPoint out, you know. But they had a different perception or a, you know, a different viewpoint from what we could do.

But it’s an inherently imbalanced relationship between the members of the public. Unless you say, “OK we’ve got members of the public, we want to generate research questions with them and then carry the process through from beginning to end.” So, you know, I understand both, I really understand both sides of the coin and probably for me being in a position where I don’t have power because I’m a, you know, at the bottom of the chain within that academic pyramid.

It’s probably easier for me to feel solidarity with the members of the public, but I think there’s also something about the ethos behind it. I think well it just, you know, I generally take a lot of gratification from working with, you know, working with people that are not the academic tribe because I struggle to identify with what that means to be in this academic tribe. So I think it keeps it, you know, for me it keeps it on a really personal level, really fresh and… And but also, you know, I guess and it once, should I ever be in a position of power, I will feel the strain of, you know, the competing interest that you’re dealing with and the timelines and all those barriers that have been identified in all these reviews and literatures. It’s then harder to do but I would probably make a decision to do it well or not at all if I was in a position of power. But there’s another dynamic with that as well and I, you know, I could, you know, very honest about that it, than that gives me almost leverage and I think there’s another behaviour we identify, you know, playing the user card.

You kind of, you know, within those power dynamics, you know, you can be an advocate for the public involvement side and… So I think I probably have engaged in that kind of behaviour which is again, you know, in a way disempowering to the public involvement because it’s not really about the facts or the truths or the, you know, the kind of knowledge you want to produce or in fact the project ends, but it’s more about the dynamics of power within research projects. And that’s probably, you know, that’s probably a negative behaviour and that might create negative impacts between people and projects and I happily, you know, I happily admit that I’ve been culpable of that behaviour so.