[Laughs] this is where I show myself up because I’ve never had any training; I now deliver training to people on PPI which is this issue of kind of because I started doing it people then look at you as if you can do it, so you try and catch up really quickly. I think training is an issue. The difficulty there is that I think so skills based training I haven’t come across anything that would do that you know, and that is very rare to see for researchers anyway I think. But then you think, you know, you can go to training to train you into doing interviews and how to react the right ways and how not to take things over and stuff so maybe there should be similar training available on you know helping to chair a PPI group meeting or working one-on-one with PPI members just to make you more sensitive I guess to what needs to be done. In my experience their most training is kind of, it’ll be one day or a one afternoon package on the, ‘What PPI is and isn’t,’ i.e. it’s not just qualitative research. Something about how you recruit PPI members; something about thinking about issues of cost so it would be very kind of pragmatic on, you know, getting people in the door basically. But then beyond that I haven’t come across anything no, no.

In terms of the resources that you need to do good PPI or to involve people, or the resources that researchers in general need, what do you think they are?

Training. At one level there is, you can read guidance, can’t you? There’s lots of guidance out there but, you kind of need on the job training. You need to be inspired that it can make a difference. It starts in, I don’t know, it’s nurses, OTs, social workers, psychiatrists, social scientists you name it, whoever it is that’s going out and carrying out research. It feels that from the very basic level of doing Masters, you know actually under-graduate under-graduate, Masters, PhDs need to have modules in there that show the value, if you’re doing health disciplines, the value of PPI because I think that actually we’re missing a trick by not training and skilling people up from the very earliest point.

And it’s easy to say, “Oh you know there’s not enough room and I haven’t got, you know in the PhD, you know it’s just too complicated; supervisors trying to make sure you reach the goalposts and don’t add any complications in it and do you really need to collect extra data?” So adding in that sort of layer they might be thinking… But if we’re really thinking about trying to transform research and do best practice around research, and if it’s a funding requirement later down the line, why aren’t we training people to do it at the very, very beginning and making it a requirement at the beginning?’

So in terms of what do people need I think that, you know they. Mentoring, supervision training is really, really important and it’s through that that I think people can become inspired and seeing the real potential, and lots of sceptics are converted as it were, when they get involved in projects where they feel it does make a difference.

And do you think researchers need training?

In PPI?

Mm

Yeah I think that would be good because without some kind of training I don’t know how you would, how you would decide to do things. Like there’s so many things you can do wrong, you know, particularly this is people’s lives. To me cancer is something I work with that having that in your life is a totally different thing. You know, childhood disability it was my work to someone else it’s their everyday, it’s really emotional, a big issue for them so particularly this is everywhere in health research so I think you need some training in what to do kind of practically, like how you can integrate it effectively would be good, would be needed to ensure that people are actually, I say doing it right, but it’s hard to say what is right but you know, if people aren’t wasting their time with PPI. But I think also some kind of training and dealing with people in those circumstances would be helpful. You know, that kind of empathy doesn’t come to everybody naturally and if something does go wrong on a practical point of view, to you oh it’s just a bad day at work. But to somebody else it’s their life and there’s a lot at stake yeah.

Do you think researchers could benefit from training in how involve?

Yes, yes.

Tell me a bit about that

But are we there yet, I think, you know, those of us that are doing it need to get together and think about the things a little more like conceptualisation like the sort of the architecture around good practice, like how we set out what we want to do and then therefore can measure it a bit better and how to report it. I think we, we need to get some of that agreed or shaped up certainly and then yeah we probably do need to start talking about it a bit more and getting it out there. And, you know, organisations like INVOLVE are brilliant at sort of distilling that kind of activity and disseminating it but we need to do a bit more of it. So yeah I don’t think we’re ready to start running whole sale training programmes to every junior research associate coming through every university. But I guess also what I’ve said about involvement being a dynamic process shaped by the questions you’re wanting to ask, shaped by the people that are coming in that, you know, there isn’t going to be a strict rulebook on, on how to do it, so we probably need case study, lots of case studies and examples and, you know, I think that’s where we’re at the moment.

What about training for researchers do you think that academic researchers need training in order to be able to involve people?

Do you know what? You would hope they wouldn’t need it, but the reality I think is that they do. Because I think you get so used to operating within your own particular silos and you get so used to operating as a lecturer, certainly in a post 92 university like this one, you know, which is predominantly focused on teaching; it is changing slowly, research is becoming a higher priority but, you know, the majority of lecturers here are involved in teaching. They’re used to going into class and being the one who’s in control, you know. And I think its offering training in engaging with the public is a good idea because it grounds them in, you know, reminding them what it’s like, you know, and listening to other people’s stories and perhaps taking a slightly softer approach that is less paternalistic perhaps.

Both have, I’d say they both need it but they both need the opportunity to be trained.

And that has to be based on individual learning styles and individual learning needs assessments, which is a rather formal term of saying, you know some people choose to learn and want to learn more about it and some people want to learn experientially.

But I think you need to be able to offer training and suggest that people learn in some way which may be formal or informal. But, researchers need to know, need to find out, learn how best to involve people if they’ve never done it before and how to do it better if they have and that’s a continuous learning process. And patients and members of the public who’ve never been involved before need to know what they’re getting themselves into which might mean a bit of training about research; it might mean going as far as The Voice course that I went on at Bart’s Cancer Institute it was quite extreme, you know most people who are going to get involved are not going to need to, or want to know, as much about cancer biology as I now know and the rest of the course attendants know. But, you need to know something about what it is you’re getting involved in whether it, you know public involvement or user involvement in whatever it is, health or anything else, you need to know what you’re getting yourself in for and you need to know how the processes work. So, you know its training but it needn’t necessarily be hugely formal. Or it could be hugely formal and you have to have a range of ways to address people’s learning needs.

Yeah

But it’s the same for both and that’s what I like about the Building Research Partnerships workshops they’re nice. What’s really good about them, what makes them work at that level and probably at that level only, is that it’s a shared learning process and they work at their best when there’s a mixed audience of professionals and lay people, because they learn with each other and they learn. The key thing about public involvement is conversation, is talking to each other and they find that in learning about public involvement they’re actually, they find out half way through the day, the sort of light bulbs go on. They realise, oh yes I’ve been doing some involvement.

Yeah

And they didn’t realise it, which is lovely you know and it’s; you watch people go on a little journey and you know the professionals realise that patients and the public are human beings too and the patients and the public realise that research is complicated but isn’t that complicated, you just need a particular skillset and you can meet them part way.

And I think I’m probably in a better position because I’ve spoken; I’ve had the chance to speak to a lot of people who have involved people so the next kind of projects that I do I think I’ll be more likely to feel comfortable with doing it. But prior to doing this I was probably in the argh!’ camp. So the support I guess really it’s hearing about other researcher’s experiences. It’s having some kind of, you know, I say guidance but, you know you need a few flowcharts with things you know. How do you deal with the payments issue, how do you deal with, you know? You know there was a discussion with one of the involvement groups, so the lead, the lead academic for that was sort of saying how, you know, how you manage when something goes wrong and that person needs to be managed out of the group. You know so there’s kind of, you know, it’s like any sort of interaction that’s going to; things are going to go right, things are going to go wrong and it’s you know the kind of, the real nitty gritty of it I think is still quite nebulous really.

So I think that’s getting that right is, would be really helpful to researchers as well and I think, you know, it’s sort of. I’m not sure, I don’t even know if that’s a training course or what I’m not entirely convinced by that but, you almost need to get, you know, researchers and you know, patients and the public in the same room and get; have a few kind of, you know, home truths maybe, I don’t know. But because, you know, you sort of. Because I think you know on both sides sometimes there’s a lack of understanding, there’s a lack of understanding of, you know, the sort of things that, you know, we have to do. We can’t, that just can’t get away from ethics committees. You can’t, you know, as much as you might like to sometimes. Or you know you, you know, we’ve got to have a consent form, we’ve got, you know all these kind of things which, you know, for a member of the public sometimes they’re like, ‘What,’ you know. So it’s sort of a broader understanding of, you know, the research process but from, you know, from our point of view it’s actually appreciating that, you know, why should that person fit into our system? You know are there ways that we can involve them that are, you know, less kind of restrictive and that sort of thing or can we get their views about things, or give them a voice you know in other ways? And I think some people do like citizens juries down the way and stuff like that. So yeah I think there’s just, I think there’s a lot of stuff out there but it’s actually bringing it together and I’m not sure that people have done that yet really and I think that’s possibly part of the difficultly.

It’s an interesting question because we’ve never had any, to my knowledge. I hope I’m not – [laughs] No I haven’t had any training to do PPI. I suppose you could quite readily put together a course that would be based around communication in meetings and, you know, that kind of, that kind of thing but I think most. I think there is growing kind of work around the methodology but that’s the not the actual doing of it. I think if, maybe some training to help understand people, to help people understand the value of involvement rather than just a kind of tick box exercise. But that’s not, that’s still not the actual doing of it. I think there’s a kind of. It’s, you know, I think training around why it’s important and different ways of going about it could work and it depends whether you’re preaching to the converted or not. You could see well, I would imagine people who would go on those kind of courses are already doing it but I might be wrong [laughs], I might be wrong about that. Certainly I think when we’ve asked our parents; I mean we try and, you know, when we’ve asked them what they get out of it, they like coming because they’re, the fact that they feel valued and they feel like they’re contributing and they feel like they’re making a difference so if you were going to try and train people to do it, it would be around those kind of skills and maybe different, I guess raising awareness of the different ways that people can influence research without scaring academics who might find the whole prospect terrifying I suppose, because it is terrifying [laughs].

Yeah it, training is, you know, the concept of training researchers to do PPI and training PPI advisors to, to support researchers is really hard. Because you, the danger always is that you end up with a very reductionist cookbook type approach to, because you’ve got to talk about, you’ve got to talk about this, you’ve got to talk about that, you can’t leave out this, you can’t leave out that. And so you end up with something that’s fairly structured. And I do, however, think that letting people use online there’s some fantastic online resources and Healthtalkonline for example, is one of those resources that get researchers, for example, used to hearing people talk about their illness experience or their experience of services or their beliefs about health and illness. I think that’s really important because often it’s about choosing the right words, using the right language to communicate with the other, you know, the other being the patient or the researcher as far as the researcher is concerned, as far as the patient is concerned, or the involvee is concerned.

So again digital technologies have made it possible for people not to be observed and to independently access and use resources to expand their understanding and their awareness. And as I said to you I think right at the beginning, I don’t think involvement practises rely on formalised knowledge that is important but it’s necessary but not sufficient and that some of the awareness and the informal knowledge needs to be harnessed as well, and how you do that is really difficult. But I think, you know, I come back to my point about developing a supportive infrastructure for PPI which involves establishing ongoing continuous collaboration and partnership where, you know, you might have internships; so you might have PhD students or junior researchers work with groups that have been involved in research or are involved in research, so you’re developing capacity. So training becomes less about developing particular skills and expertise it’s more becoming immersed in a community of practice which is centred around patient focused research or, you know, lay person focused research, in which case training is less about intellectual development or skills development.

It’s more becoming immersed in the culture in which this is what you do and this is in the way that research is done, implementation is done. Do you see what I’m saying it’s much more, it’s much more holistic than just looking at people’s training needs. People need to become part of a culture, part of a community where that’s the natural way of operating, there is no other way but involve people and these are the people. And so people will have met people who they can involve so that it doesn’t become a thing, “Oh, you know, who do I contact?” it’s, you already know because you’ve already worked with them and it’s natural to go back because they’ve become your friends or, you know, you’ve done some, you’ve done some activities with them previously. And I suppose that’s where you want to get to in order to develop true partnerships with local communities and patients.

See it in action essentially. You know it’s the old see one, do one teach one approach actually applies to very many things, and I think that applies to public involvement. So, the best the way to learn about what involving patients and the public can bring and why it’s a good thing and what it might do is to observe it.

You know so, if you have a researcher however senior, who’s never involved anybody before get them to be an observer on a patient group or to just, you know be a buddy or an observer on a research project where patients are being involved and see it happening. Just simply observe and see what they think and that’s the best way; it’s probably the best way for anything really is, you know you need to observe and experience something before you do it yourself. I think it’s an awful lot of, it’s an awfully big ask for anybody to say, “Right you’ve never involved a member of the public, go away and do it on your own piece of research.” Better to do it in a safe environment with somebody else’s research first. So I think all people who are training to do research in health, in health and social care, should be taught about public involvement and should have an opportunity to experience it

It can only be normal practice because people want to do it and it can only become something people want to do because they see it adds value. People do things because they see it works and that’s the ultimate goal. I think you can’t force it to happen, but I think if you can introduce as many people to the concept and bring them along. So everybody’s got to go on that journey ultimately and I think it’s about the best ways of doing that are teaching it early. So, if you want something new, something different to happen then teach it from the earliest possible time. So it goes back to, you know things we want in our population are taught in primary schools. So I’m not saying we should be teaching public involvement in primary schools but, it’s about, you know and anybody who wants a career in health, health and social care, that involving the users of health and social care, whether that’s in service development or research, is just the fundamental part of their basic and post-basic training. You know we teach medical students and non-medical students about lots of things and it should include involving the people they’re, you know they’re treating and researching.

So that’s ultimately the way to do it is to make it part, just you normalise it you know so it’s part of teaching; it’s part of service delivery and it’s part of research and linking together. So, there’s a lot, there’s probably more people involved in service, improving the service delivery, than there is in research but actually the two don’t link together very well. So, part of what is, you know part of what would make public involvement normal in health research, would be by linking it to health care so that you can see the place both the research place has in healthcare and also the place that service involvement, so user involvement has in healthcare and research. So it’s linking those things together.

Do you think that there needs to be training, support, things like that for patient and public involvement?

I do. But this again, I know this is an issue, this is a potential contentious issue. My, so the kind of debates I’ve had are people who have this view, for example, that you should have naïve PPI so that the person who is coming is a naïve member of the public who doesn’t have, kind of, that research hat on or those research blinkers or whatever you’re kind of assuming research does to people, and who is just giving a, I guess a pure untainted view of what it’s like to be the member of the public who suddenly gets the letter about the research trial or who suddenly hears about this research finding and they can give that, just that that sort of untainted view of just what it’s like to experience that. And I understand that and I think that’s valuable. But because I would, I think PPI should be more about a continued involvement and partnership; I think that does need then, training and support. I don’t think you can ask someone to walk off the street and, as I said, comment on an analysis plan and comment on an ethics application.

So in that case I think we do have an obligation to offer support to them and to teach them, or to offer them opportunities to train if they want them. As I said, it goes back again of course; you know, people would be different I think; people, some people come on and they want to just give their opinion and other people, I think, really want to get more involved. And I personally think that there is a lot of, a lot to gain from having, you know, what get called the expert PPI members. I don’t like this idea that once you become more expert in PPI suddenly you lose that interest or that passion. So my PPI partner, my collaborator I talked about, her issues, her passion is about carers and things affecting carers, and she’s incredibly experienced and knowledgeable about PPI, far more than I am.

For example, she has huge amounts of experience in doing it and the idea that that taints her, her passion or the sort of, the raw experience of saying, “But this is what it feels like to be that person.” I don’t think that’s true at all and I think, I personally think, that kind of devalues the contribution that those people can make who are these amazing people who have this passion, who want to share their experiential knowledge with us, but who also have experience and skills that mean they can do that. I think they’re amazing, you know, and it frustrates me sometimes when I see this argument, “well, we’d better not train them because then they’ll, you know, they’ll be too much like us,” or something. I don’t know, I find that, I find that strange. But as I said, that’s, I know it’s an issue of debate and I’m probably being unfair to people who have the alternate view but it’s my interview so I can [laughs].

And I think, and again that’s the other grey area as well I think, is around, you know, do you have to be skilled up; do you have to be knowledgeable to be involved or, you know, just being who you are, is that not enough? And I think, I think the jury is still out on that one to be honest because it’s sort of I’ve worked with a number of different camps on that you know, where, you know something like this medicines development sort of think they have to be really skilled up on everything. You know they’ve got to know the ins and outs of clinical trials and ethics and everything else. And then, you know actually this person has, and we’re talking to somebody who’d ; I think her child had an awful accident like she’d been, she’d been burnt and she was taking part. She was OK now, but she’d been taking part, it was work around pressure dressings I think. And she was sort of, you know, and I thought actually, you know, ‘you’ve got enough knowledge there you know, you don’t need skilling up on this, you know. You know what’s, you know, happened to your daughter; you know what she needed to manage it, you know that’s more than enough. So it sort of, you know, I guess that’s sort of the another grey area as well. There’s lots of them unfortunately.

Again I think I don’t particularly agree with it on, on, is it really, I think there’s two issues to it. I think, again I think there’s two issues being conflated here one issue is to do with, I work with people who had some very serious health problems, people who’ve suffered from depression and lost their careers and their jobs and their houses and stuff like that. People who’ve had a stroke these are all big events, or people who’ve developed diabetes and they’re going to live with that for the rest of their lives. And one of the things about diabetes is people think of its just diabetes but actually when you realise the consequences of diabetes especially if it’s not, yes and yes it’s for life. So I don’t think the fact that somebody happened to go and do a half day training on research methods wipes that out and in, in a way I’d like to know where all this training is that people are doing which is then socialising them into the, into the culture of research so they lose their layness. I don’t see that that process wipes out that experience and again it’s that experiential knowledge that you’re wanting to access I don’t think that that’s wiped out

But I think the other, the other issue that really what people are talking about with the professionalisation thing is really something about the fact that do people have a real say, because I think what people worry about is that it becomes tokenistic and if you get somebody involved who goes along with that tokenism that’s, so you’ve got somebody who just turns up to a meeting and they, is it okay do you think it’s alright and they go yes, yes that’s what people are concerned about. That’s not about necessarily, you can get that problem whether people have been involved in research before or not, in fact I think if people don’t know about research when they get involved they’re more likely to be like that because they don’t feel that they are in a good enough position to challenge. Whereas people who’ve done, got some knowledge about research actually will feel more able to say I’m not quite sure. I remember being in a brilliant situation where we were very early days in in designing a research project and there was a very big convoluted debate taking place and this patient who had done some training on evidence based medicine said Can you just tell me what the research question is? I’m not clear what the basic research, you know, what’s the population, what’s the intervention, what’s the outcome?’ and that was classic. And there was a professor there and looked at him and he said I may be asking a silly question here’ but he said No actually that’s exactly the question that we need to get ourselves back to here, what is the research question. So I think actually people are more likely to do it because they’ve had that training, I think the issue is that where you create opportunity, where you involve people but you involve people in a very consultative model, that’s when you tend to get the tokenism or its just simply people nodding. But that’s not the person who you involved’s problem, that’s a problem of how you do your patients’ input in public involvement. and I think it’s a different issue but I think people talk, talk about one when they’re talking about another and say this is professionalisation causes this and I don’t think that’s correct.

I think the expertise one is an interesting one but you can see it from both sides obviously. It’s a really, there are some arguments that are just focusing on people’s complete naïve experiences. I think the way I’ve started to think about it is that actually the expertise that people gain from being part of PPI is part of what we should be giving them. You know, it should be, it’s kind of a one sided relationship, well it’s not, I mean that’s the point that parents, parents make to us that they do get something out of it; it’s not just about contributing to research, they get something out of being part of it and I think that’s an important part of the whole expertise argument that it, if people want to be involved in a systematic review and you give them some training on that then they get something out of that which is useful to them in terms of confidence, skills, you know, all manner of things. So from a, from a personal development point of view I think, well, you know, it’s brilliant, it’s fantastic. If somebody wants to develop their knowledge base and, as a result, can participate more in some of the, some of the less accessible areas of research, then I think that’s fantastic. I, again, do see the point that sometimes I know for a fact some of our parents know a whole lot more about certain elements of conditions and, and not just from experience, from the fact they attend a lot of conferences.

So I think it really depends on what your purpose is, you know, what are you trying to do? I’m trying to involve some parents of disabled children. This person is a parent of a disabled child, he has all of that experience and the fact that she may be, she may have learnt how to, how to do a bit of thematic analysis so that she can be involved more doesn’t take away from that experience any more than, you know, me being a runner takes away from, you know, something else. It just, yeah, so I don’t think we have the right to say to people, “We want you to come and be involved in our research but we don’t you to know anything about it, that’s our domain, no.” So yeah there you go, that’s pretty much it [laughs]. That’s pretty much my views on it.

Do you ever feel that you and your training and your expertise and experience and so on is sort of devalued because now we’re saying, you know, get these people who haven’t trained and so on to come and do the job that we’ve traditionally done?

It’s sort of crossed my mind that that’s an issue but it doesn’t bother me because I know that whatever the rhetoric the reality is that we still come in as professionals and do it yeah. So I don’t feel kind of threatened by it or undermined by it or anything like that. But yeah maybe there’s a bit of double think going on in my mind that you look at people and then actually think, ‘We’re just going to do it anyway.

We have involved people in kind of supporting analysis. I mean we did, one project a few years ago where we had a couple of lay people who were kind of interested and we gave them transcripts to look at and said, you know, “Go through and pick up some sort of themes and, you know, what do you think the issues are?” Which was kind of useful up to a point but not fantastically useful from our point of view. So again you’re sort of feeling slightly unsure because it’s quite a lot of work to give yourself if then you go, “Mm I think you misinterpreted that and I think you’ve put far too much emphasis on this,” because they’re not trained at doing the analysis you know, they have a much more instinctive response. So I felt a bit uncomfortable about that I think that I’d sort of set, we’d set people up to play an active part and actually it was quite a big ask and then you feel you’re not really doing them justice, you know not using their work as much as they might hope it was used.

And if we’d been wanting to, you know we had a that if you want to do it properly then I would have sat down and said, “Now let me give you a tutorial on how to do this,” and gone through it and I’m sure they would have learned but yeah we don’t, yeah I’m not in a position to give that kind of training just because of time, resources and also, you know, there’s probably limit on how much they want to put into it really. So I guess one of the reasons I don’t feel passionate or threatened about that is because ultimately I know that we, for all the rhetoric about user control, actually we still have the control?

OK

It’s alright it’s a bit, it’s only saying it out loud I realise how clear that is in my head, but it is quite strong.

But what do you think about that, that the fact that at that stage maybe a patient or a carer would be reviewing your proposed research on ethics committee?

I would be very positive.

Hm mm

I think it should be mandatory as it’s getting to be. And I think though that these people should be carefully and highly trained; everybody should do their own bit to the better good. So I welcome, actually really wish to receive advice on how to better my relationship or how to improve on my debriefing procedures. On the other hand most of the times the discussion is between researchers and people who understand very little about what you do and impose their views and this is wrong.

Hm mm. And do you think when you say people who don’t really understand what they do, do you mean patients there?

No I mean people sitting on ethical committees who have the power of hampering a study, and most of the times the request that we got are bizarre. If you go to any kind of scientific gathering, most of the stories that people tell are jokes about their relationship with ethics. Their requests sometimes are jerk reactions, automatic. In one instance, recent we were coming out of a study, an fMRI study, an imaging study on verbal memory, remembering words. So we requested that English speaking people took part and ethic committee did not like it because it was discriminatory to people who didn’t speak English, so they asked us to provide a translator for people who should have taken part in the study but didn’t speak English. Unfortunately we couldn’t find very small translators, humans to put in the scan, little gnomes sitting in the scans. And these things are telling me that the relationship is going out of hand. By the same token our research has to be snappy and fast and we cannot just wait months and months for the power, to be, deciding whether we are worthy of an answer.