For researchers. I suppose my message for researchers would be don’t think you’re alone in doing this. There are people out there who are already undertaking involvement with the public. And speak to as many people as you possibly can. Ask them how they’re doing it. If this is your first time of doing it, ask them about the ways they’re doing it and what have they found has been the barriers for them and what has been the facilitators and is there anybody talk specifically about the project they want to do and is there anybody they know who’s an involvement co-ordinator who works with this public, because it is about targeting the right public. I’ve had three people recently come to me and say, “We want to do this involvement work with young people; we want an advisory group but we’re not really sure about how to do it and I’ve been more than happy to speak to them because I think it’s important for us to involve more people. So yeah I think if it’s your first time involving people look who else is out there, contact people, ask them how they’re doing it and just get as many tips as you can.

That’s great. One thing that’s just popped into my head there was, how would you convince people who are sceptical about involvement what would you say to them?

I would give them an example. I would try and maybe talk to them about the example I talked to you about today about how our researcher developed it up and how he’s changed his project. And there’s other examples like I suppose I would talk about the year six pupils we work with who didn’t understand peer pressure’ in the question. And I would give them examples where I would try and let them know that this has made a difference for the better and yes, these are just one or two anecdotal things from me. But these are real examples of how it has helped people yeah I think. It’s always difficult I think though because if you are sceptical and you don’t have any reason to do it, if nobody within your line management is pushing you to do it and you could quite easily do the research quicker by just doing it yourself yeah it’s a difficult one.

Well you see I suppose I didn’t really have so many issues because I go back to this whole thing about being a clinician at heart and you have to talk to your patients. But I suppose if you come from a background where you didn’t have that level of communication, if you were purely academic I’m not quite sure what that term means sometimes, but do you know what I mean? Then I suppose it might be difficult to think about how you would communicate with the public. It’s a hard concept for me to work through that one but, you know, it may just be down to their own insecurities and fear always comes from insecurities. But then again the only way you’re ever going to overcome that is to tackle it head on and it goes back to that message of, ‘What have you got to lose?’ There are so many ways now that you can, and so many support agencies you can go to access PPI and they’ll actually hold your hand doing it. So it’s not something that you have to sort of boldly go forth and pave your own way. You can do it that way if you want but you can do it with support as well so yeah I can see where some fear can come from but that shouldn’t stop you, that isn’t sufficient reason for you to not go and try it out.

Hm mm OK.

That you might just get a little bit of gold at the end of the rainbow for doing it.

Well I suppose it’ll sound quite worthy I suppose, but what I’d say is if, if you want to get funding for your research it’s mandatory. The more that you can demonstrate the integral role involvement for patients and carers in your study the more likely you are to get funded. But that’s not only because you’ve done it, but it’s also because the patients and carers will make a really valuable contribution at all stages of the design and the conduct of your study. And it’s not as difficult as it seems and there’s a great deal of enthusiasm among patients and carers for getting involved in research.

Yeah, no but I think the key is getting organised because you have to be scheduled. You can’t just say, “Oh right, well I need to find some patients, let’s go downstairs, there’s a clinic downstairs, to find someone.” Get organised, see the value in it, immerse yourself, try it out and think about the benefits; reflect on what it’s doing for the questions in your research as a whole; and think about what it’s also doing for you in terms of understanding where the gaps are. Now, if you think that’s what research is really about, then you have prioritise it and once you’ve prioritised it you’ll find the time.

That also means and I think that if you are having a risk of creating lots of negative impacts both on the members of the public but also on yourself as a researcher or a project team, there is a certain responsibility and a risk to consider. And I would say if you’re not fully committed to making that work and a central part of any research, then it’s an unethical choice that you’re doing. So I’m against, I would advocate against any public involvement that hasn’t got a serious and, you know, a very early, also an early stage of planning, collaborative planning on what the values and the expectations are with regard to this project, and also, you know, identifying the areas of impact which you want to have a, you know, an almost a negotiation. So I would say, you know, any research proposal that hasn’t done this before they’ve put in a grant and it should be categorically stopped, you know, by the commissioners and the funders because it is unethical to do bad public involvement.

I would say make sure that you are actually open to changing what you think will be happening and don’t bother if you’re not. So if you don’t mess people around and, you know, make them think that they’re having a say on stuff and actually you know what you’re going to do already you either have to not bother or change your, or open your mind, and it is really hard to do I’m sure but. Well I suppose it depends if you’re the kind of person who could live with yourself if you wasted people’s time or resources. And briefly to people who didn’t do PPI I would also try and think outside the box. So you may think, like in my work for example, I don’t think there’s really much scope for PPI but I’m still thinking about it, there may be and we have an excellent public engagement person at this University who I’ve talked to a few times and said, “Oh we’re doing this but I’m not really sure how I can involve people in this,” and she’s just full of ideas. “Why don’t you do this; you could do this with them; you could this activity.” So don’t think PowerPoint you know, think, just be imaginative in how you could do PPI.

What about messages to researchers who are sceptical or reluctant to do PPI?

To reflect on the reasons for their scepticism really. Just, you know, people have their own views and they’re very entitled to them. I don’t feel evangelical that everyone has to do it this way. I think there is a significant proportion of people who are very invested and believe in PPI and I think I’ve been on a journey moving towards understanding how it can impact research, but it’s taken me some time to understand so, and, you know. I think there are ways that involvement can influence all types of research at any level and but people have got to be open to it and if people aren’t open to it then, you know, I think that’s fine. I think there are debates that can be had about how much resource to put into it and obviously how the research, how the involvement happens because if it’s being done badly and it’s not having any impact then is there any point to it? And is there some harm to the people? And if people have had bad experiences they might not engage again. So, you know, it’s about identifying good practices and sharing those and if people think that will help them then that’s great, that’s yeah I do. Yeah, full stop.

I guess it’s easier for somebody like me as research is very clinical because I’m used to trying to please customers really, I’m used to sitting in clinic with people and so PPI is in research a very small step from what I do clinically anyway. I guess that if you’re a bench researcher and your work is potentially very important and very valuable but much further from every day experience, every day clinical contact then, then PPI might, the relevance of PPI might appear less clear and the threat from PPI might be more alarming and because you might be afraid then you’re going to, you aren’t going to be able to pursue your, your particular precious ideas and you might, you may worry that it may be deflected in some other direction which you don’t fancy. Clearly there are, there are kinds of blue skies research which are well worth doing which researchers have a hunch would be useful and which most people aren’t going to have a clue about so in PPI clearly shouldn’t be allowed to rule research entirely I think, you know, it’s you want very wide diversity of kinds of research and kinds of project to be pursued. But nevertheless I would have thought most in the context of the regularity of clinical research projects it would be helpful to have that kind of input.

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 don’t know whether, you know, anybody can say anything to people who are so sceptical that will make them change their minds because, you know, if you have a mind-set which is I’m the expert, I know what I’m doing, I don’t want any lay person interfering with my work then you know it’s very hard to break through. I suppose it is around using for a, that people use all the time in which, in which examples of good PPI practice and examples of how things have made a difference, you know had positive outcomes. It can be disseminated and celebrated I suppose that’s not happening enough you know if you have academics who get, who’ll get valued on the basis of their research income, their research publications, possibly, you know, their teaching number of PhD students.

If there is no way in which PPI is valued in any of those then people won’t respond in a positive way or do it or even consider that there might be something in it because they’re not, that work is not acknowledged. People who do PPI tend to be working, you know, in their own time they’re doing things independently creative. PPI is expensive so that’s why often the costs are sort of pushed down to keep the research costs and total down. You know, there are so many barriers and it’s a surprise that people do it anyway because it isn’t valued usually by their institution. There is no way it can be celebrated. You know I haven’t come across any awards that are being given for good PPI practice. INVOLVE is working very hard but they can’t do it all. You know they’re doing a fantastic job but their remit is so huge and it can’t be the NIHR who does it all, you know. It needs to be something that’s celebrated much more widely and acknowledged and recognised much more widely than it currently is.

I don’t think you can say anything to one individual to make them change their mind. You know, it’s got to be in the water, it’s got to be in the discourse and that will make people think, Oh hang on I used that about PPI, but you know maybe there’s something in it. And you know, I have spoken to lots of people who have said to me, “Oh I’ve always been a real sceptic and then such and such happened,” or, “I read this, such and such,” or, “I heard you speak about something,” and that’s what just starts people thinking, Oh maybe there is something, there is a value here that I hadn’t previously recognised. And people who, and often people have to demonstrate, you know, some PPI involvement, and they will opt for something tokenistic and it’s, if you get the chance at that point to say, “Oh I see you’re doing such and such, I wonder had you considered?” And then if somebody is receptive they might say, “Oh yeah,” or member of their team, you know, you might just, you might just stimulate their thinking and their creativity. But, you know, there is no magic bullet where you can turn a sceptic into somebody who fully embraces PPI in their work.

Yeah okay. Well I think there are both reasonable and unreasonable reasons for scepticism, so we’ll deal with the unreasonable ones, it’s about power. You know, I’ve said you know you have to make compromises and it isn’t easy, for those of us who, you know, yeah the Professor and yeah the consultant and all the rest of it, you kind of get used to telling people what to do, which is a terrible thing but it’s true, it’s what happens in your life. And so public involvement that is more than tokenistic involves you kind of giving up that power and that’s the unreasonable objection. You know, and it goes along with what the bloody hell they would know and so on, all that stuff that. The reasonable, but wrong, objections for me are firstly that it’s really difficult and really expensive and that’s right because if you don’t do it properly, which takes time and resources it’s a waste of time. So people say that it’s just adding another layer the difficulty of getting the right kind of involvement, it is difficult and requires a kind of structural investment as well as a kind of direct investment in one project, you’ve got to have the structures around you to make sense of it and the people who can do it right. You need to develop skills, you know, if you’re a person who doesn’t have those kind of skills it’s kind of hard work and you’ve got to develop them or employ somebody else who can help you. And then we talk about the fact that there are problems and you can be, you know, you can run into very, very I mean often we talk about the difficulty of making sure people feel able to be involved, sometimes you can get very powerful individuals involved, personally powerful who can you know, be very damaging if they are getting things deeply wrong. So yeah all these things are real risks and difficulties, me I think if the game is worth the candle so I would try to deal with those things but it doesn’t mean they’re not real. So I think those are the two camps and but to be frank I think quite often the people expressing the reasonable reasons are often driven by the unreasonable so it’s very often that actually they don’t want to do this because they used to know what the bloody hell they want to do and do, and they make excuses.

The other real complication is I’ve thought for a long time about public involvement, looking at it and thinking about it as a change management process. If we wish to see it as being normal practice and Sally Davies, the director of R&D for the NHS, has gone public and had it written down several times that she wants it to be the rule not the exception, and nobody would disagree with that. But, in order to do that you have to change behaviour, so it’s a combination of individual and organisational behavioural change and change doesn’t happen, it has to be made to happen and it’s a balance of drivers and barriers. And public involvement isn’t something that would just naturally happen because it’s great, because it means research takes longer; it’s a bit more complicated; there’s another set of people to be involved; it costs more. There’s lots of barriers to it and when the barriers outweigh the drivers, change doesn’t happen naturally so you need to push change, and it’s been quite frustrating for me to see how little attention has been put on, ‘How do we change people’s minds, how do we change people’s behaviours, what are the different approaches to getting more people to be involved?’ So that’s a complication and it seems to get more complicated the more we, the more people get involved. And a number of people who are really passionate about involvement, particularly researchers who are passionate about involvement, get so passionate about it they think it’s everybody does it and they don’t realise that everybody doesn’t and they’re not very good at encouraging change in their peers, which I find quite odd and quite frustrating at times. But they are probably the most effective change agents because people will look up to other people who do something when they see it’s effective, and they’ll be far more effective than somebody like I can be working for an authoritarian organisation. So, you need a mixture of top down and bottom up, but actually the peer to peer influences; you know if you look at all sorts of things where people have changed behaviour, the reasons, ultimately the reasons they’ve changed behaviour is because their peers have done it.

And clinical audit is quite an interesting example. Because I remember, when I started at the Regional Health Authority in 1992, clinical audit was just coming in at the same time that NHS consumers in research had just started and the concept of involving patients and the public came in. Twenty two years on, patient and public involvement is not normal practice but clinical audit is and was ten years ago. In fact, it probably only took five years to embed and part of the reason for that, despite initial vehement, professional resistance to it, was peer to peer pressure and continuous rounds of audit led to, you know those who were resistant to change being isolated and challenged by their peers who eventually changed their minds and they did it. So there was a top down dictat but ultimately it was the peer to peer pressure and influence that brought about the change. But it had that bottom up, top down mixture which we’ve not had in public involvement.

Keep your eyes open and don’t be prejudiced as I was to start with. You’ll find it quite rewarding once you get involved in it, and you’ll perhaps see things from a different light. My circumstances are quite unique because I was very much sort of engineering and quantitative hard science, so this was a world which was opened up to me in a different way, particularly with other qualitative recruitment issues with my trials. But I sort of, the door opened and I was suddenly aware of it, but now it’s a really important part of what I do. So you’ve got to try it, you’ve got to get your feet wet and have a little dabble in it, and don’t do it if you’re a very impatient person I would give that piece of advice. So, if it’s not for you at all then leave it to people who’ll do a good job of it. We don’t want the wrong people doing this I don’t think.

Yeah that’s a good point about the wrong people doing it because we talked a little bit about who the right patients were.

Yeah.

So, there’s the right researchers as well.

Yeah, so you will see in meetings where people try and put words in other people’s mouths. You will see instances where somebody has such authority or self-belief, or perceived authority, that their word is final no matter what. The patient can talk about whatever they want; in the end they are put down because I still am the authority on this one, sorry, thank you very much. So, we have to have some antidote to that, and that really annoys me when I see that happening. So it’s all kindly of patter patter, yes lovely, would you like to speak Mrs Smith? Yes, no, yes fine. And we’re all fine, but at the end of the day we’re going to do.

In terms of messages for researchers who do or don’t do PPI, I guess it’s what I’ve said earlier you know. As a researcher we have a long timescale before we get the sort of buzz of, you know, the paper being published. Even longer timescale before we get the actual impact, and we’ll probably never know the people on whom we’ve made an impact. At least by being involved with PPI groups throughout the course, we get a bit of that positive feedback as to what the benefit might be and for me that’s very, it raises my enthusiasm to battle the challenges of getting research funding. Of all those practicalities of ethics applications or whatever it is you need to do because you can see the endpoint that you might be, you might be leading to in terms of making a difference. For those who don’t do PPI it’s more difficult. Yeah other than saying that it does make a difference to what you deliver at the end of it. Not sure what messages I’ve got.

Okay and are there any messages to researchers?

It’s not about just getting the right processes in place before your research starts, you know, get the funding sure, think about the venue sure, think about the skills that as a researcher you need to do the job sure, do all of that thinking it will still go a different way from time to time so it’s about flexibility and creativity and being an advocate for involvement, we’re still at the point in time where for all it has a very central place now in funding applications and we’re being asked to report on it and being asked to report on it better. We are still are at the sort of forefront of thinking about this. So it’s, it’s not easy and it’s not about doing all the right things up front and then knowing that it will work out. You need to, you need to keep working at it, but that’s what makes it so much fun.