I think you can, I don’t imagine many people describing themselves as hard to reach. I think quite often researchers are hard to reach, clinicians are hard to reach, and institutions are hard to reach. And certainly when I was working in programmes with say Sure Start parents it was very much about ways and means and it entailed things like providing a crèche that meant that people weren’t hard to reach then. And similarly with expenses, you know, there are lots of practical things that can be put in place that enable people to get involved, it does require effort so yeah.

I think and you often see that sometimes on adverts for things that you know must have experience of committee work and you sit there and think, ‘But why?’ And I think, I find that quite annoying but then it’s sort of thinking. Again that probably taps back onto the; I think I made the point earlier that actually you’re trying to involve people in existing systems and existing, you know, very kind of professional’s the wrong word – but you know kind of professional structures and, you know, rather than actually talking to them about how they should be involved, so maybe it’s clipping on it a little bit and actually trying to adapt the mechanisms by which you will involve people. And I think that probably puts a lot of people off you know.

They’re just saying, “Oh God I’m going to have to sit in a room and be there for however many hours and they’re going to be talking about I don’t know what,” and I just think that’s hugely off-putting for some people. But I guess the point really is that you’re looking at other ways of involving that don’t involve going into committees or that sort of thing so you’re trying to get into a, you know, tap into, you know, harder to reach groups you know. Because, you know I would say that like men are a hard to reach group in this respect you know and it’s sort of. And is that kind of, you know, taking the mountain to Mohammed a bit and actually bringing the team to them or what really; or actually getting people to contribute you know in virtual ways as well. I know there’s an issue, it’s like I was just talking to someone with cystic fibrosis and they were talking about that, you know, infection’s an issue. “I want to get involved but actually I don’t want to go to this, you know, meetings through, you know, two sweaty trains and goodness knows what else if I’m, you know, if I’m, if I have got a compromised immune system I’m not going to do it.” But actually there’s other ways they can do it, is that you know, is that Skyping or is it; you know Facebook groups or whatever. You know there’s probably a thousand and one other ways of doing it.

So the first thing to do yes was to set up that group and then the second battle was I was very keen that people should get travel expenses plus thank you payments and I called then thank you payments because obviously that then led into a whole kind of problem with university finances and pay and tax and stuff like that. So I was very keen to have that negotiation early on. And we, so we’d get those things in place, I think that’s really important. and so the first job was to get the principal Patient Public Involvement Group up and running and to get some systems in place to make sure that people get their travel expenses and their and one of the things that I kind of insisted on was that people should have their travel expenses whenever possible in cash on the day rather than waiting a month and that created issues because finance were worried about chunks of cash being kept in offices and money being handed out without it being properly recorded so that created some anxiety. But we got there and I think it was really important that people if at all possible could get paid on the day. Thank you payments slightly, you had to wait a little bit for that, that was slightly different. So that was the system we had.

I think my role, because I facilitate work with the young people is very much I use my skills as a youth worker; try and make all the stuff we do quite engaging; try and make sure that I can build up a good rapport and relationship with young people. Try and make sure that it’s not too boring and not too schooly is what the young people say to me. So there’s a whole different set of skills there to actually working with the researchers. And I think some of the skills I’ve had to kind of think about, when working with the researchers, is being able to understand the research and the jargon and being able to support them in how they can involve young people. So I have done some training with the researchers previously and we when I first started we did a question about their barriers and facilitators, to why they can or cannot involve young people or children in their research and that, for me was a really good starting point. It was within my first six months, I had a very clear idea of what the researchers thought could be the issues and what things they thought could be potentially helpful for them to do this.

So I think some of the skills I’ve kind of developed up as well as being kind of, trying to work within the parameters of those two different stakeholders because sometimes what the young people want and what the researchers want are very different. And to also understand that, with the researchers sometimes they are not in a decision making place. So some of my other work in local authorities we would work with the decision makers directly, whereas with researchers, when they’re going for research funding, they’re not actually making a decision on whether that research is going to be funded and whether it’s a good idea and so, they’re kind of also taking on the young people’s views and it took me a while to kind of build-up that knowledge of research, the real world, the reality of research I think.

Some of the other things I suppose behind the scenes is working with the young people things such as dietary requirements and things which I think people kind of overlook. We do a lot with the young people with kind of ; we make sure we know all their dietary requirements and allergies. Any things in regards to if they’re on any medications and just things. So we have someone whose first aid trained but if we have somebody one of my young people has asthma if they have an asthma attack we’re prepared and we know about it. And also I’ve just thought of something else anyway also we, as part of the risk assessment as well we’ve obviously thought about child protection because we’re working with fourteen to twenty one year olds.

There may be issues with child protection and because we have young people who actually come from different local authorities within Wales, each local authority has a different system. So we’ve got a file which in there has all of the different local authorities our young people come from. So if we have a child protection issue we’ve kind of printed off their web page to find the number we contact that local authority. So there’s a lot of things which I suppose some people wouldn’t really think about which we’ve just have to prepare and make sure we’re prepared for. We also have somebody who is a manager, who is an emergency contact. So off site all the young people fill in a consent form. They can fill it in themselves if they’re over sixteen. If they’re under sixteen we have to get it filled in by a parent or guardian. And we ask everybody, even if you are over sixteen, to put an emergency contact on there so if something happened here we would be able to the process is I would phone our off-site emergency contact which would be one of the managers who then has all those details to phone families to say if there’s a been a fire in the building or.

Well because I come from youth work we do sort of introduction to youth work training and a lot of these kinds of aspects are covered in that. So I came here with the knowledge of that. I do think to myself if I’d come from maybe just a research background there’s some of these things I wouldn’t have instantly thought about. And this is where I think that it’s important when we’re doing research, but also public involvement from sort of academia from research institution, centres, universities, it’s always important to have on-board somebody who is familiar with the public or has worked with our public before. So in our case it is young people and we have myself and the youth worker we’ve done that before. There may be a whole other level of guidance and there may be other issues to think about if you’re working with adults who are under a protection of vulnerable adult’s action and I wouldn’t know anything about that but, it’s important to understand the issues for that public. And I think you can only really do in that either having worked with that public before or asking them.

I think it just needs a huge, it needs a big place in the funding proposal and that includes, and that should include regular meetings, preferably face to face and in a really casual setting as well. So I just make cakes; I just bring along cakes, OK well that’s I pay, you know, that’s my own, but that’s the tone I want to set in these meetings so. Yeah, just, you know, give a good wad of money to it but also say what you are wanting to do with it I think in a detailed plan and make that, you know, make that proposal and strategy in collaboration with people. So I think it needs careful planning as resource time in advance to do it. And then yeah just the facilitation of room space and time within the project timelines to have enough time for people to read. You know, it’s just an extension of time in every way; more time for communication explaining possibly from calls, face to face and stuff. Which is nice because it, you know, if you do that you allow yourself as a researcher a bit more time to do your job properly I think as well. So I think there could be potential if, you know, if you justify it well there’s no excuse for not having time to deliver grants. But then I haven’t been a major principal investigator yet so maybe I will learn to regret those words still.

I know you said that when you first started doing this there wasn’t any sort of formal training or anything that you sort of could have done; do you?

Well there might have been, I just didn’t know about it.

Right

Or I didn’t look for it [laughs].

Right OK. And I mean thinking about, thinking back on that do you think that training would have helped you in any way?

I think if there’d have been the knowledge out there about how to do it but I’m not so sure there was to be honest. I think the best advice you can give anyone is treat people as you would like to be treated yourself courtesy, look after them; if someone came to your house you’d offer them a cup of tea, so offer them a cup of tea and if you’ve got some funding or, you know, a bit of bread at home, make some sandwiches, you know. Our feedback forms in our first couple of years, you know, everyone mentioned the lunch. You know, that didn’t occur to us not to provide some sandwiches at midday, you know. Most of our meetings are between ten and one so we, the meeting runs from ten till twelve and then we have lunch afterwards and, you know, a lot of families really, and parents really enjoy the peer support, so it’s chatting to each other.

So lunch is a key part of it for us and we provided it. But what we didn’t understand is parents go, get invited to a lot of forums particularly, you know, about how services are organised and how few people actually provide lunch. Or even, you know, anything at all. You know, so that, that’s just so important you know. Look after people and make them feel welcome, part of something and, you know, cup of tea and a sandwich and a biscuit and bit of a laugh [laughs]. It’s not a complex intervention is it?

No?

Well no it probably is in some settings.

I’m not sure about skills, but I suppose oh people skills springs to mind. And that sounds so simplistic and, but yeah I think when I talked about the bladder and bowel example I found myself in a room with two consultants and women who’d had direct experience. And one of the consultants just didn’t have the people skills. And so I did an exercise where we introduced ourselves and said what we’d had for our breakfast. And we just needed an ice breaker and he didn’t have those skills because they weren’t part of his job. So, and I know I’m very impressed with, some people have very advanced facilitation skills and are able to draw out the person who doesn’t speak enough and shut up the person who dominates the room too much and so on. So I think there are some pretty high level skills there yeah

What I really liked there is a guide by Toucan Associates about how to Chair a PPI meeting and, and that’s quite, I mean it’s quite a bold statement I think about how to deal with that situation. So yes it can take some, some skill. And I think that’s where sometimes it can be useful to have, to not expect a biomedical researcher to have all that as part of their, their skill set and then in that case to maybe bring in a nurse or somebody with PPI responsibilities to do some of that facilitation work as well.

What are the other things like payment that are a bit fuzzy and a bit unclear?

Yeah what the role is for people sometimes. I think it’s been interesting kind of talking to people who have been involved in and again you may well have and you can tell me later. You may well have found this yourself but it is people don’t sometimes know what is wanted of them. So they’ve been asked to be involved and they’re like, “OK that’s great,” but actually, you know, do you know what you want me to contribute here, what are the boundaries of it? Is it very free, is it, you know; do you want me to, you know?” There seemed to be a dichotomy between the sort of, you know, very limited specific involvement to, “Yeah we’ve got you here and we’re not quite sure what to do with you,” type thing you know, so it’s sort of.

That’s definitely a fuzzy area and that’s been mirrored with the work we’ve done with the pharmaceutical industry as well, it’s like the role and the purpose and the aims of involvement are not entirely clear and kind of agreed and understood I think as well. There’s the payment stuff obviously. And then the feedback I think is another one, you know, what do you do about feedback? Do you, you know, are, do people know what happened. Some people don’t even get a copy of the paper or, you know, I’ve heard so many tales about, you know, “I’d love to have got a report,” or, “Loved to have seen this,” and you know, I think it’s, again it’s sort of knowing what you’ve contributed to because, you know, it’s like anything you know, anything you do in life you want to see what the consequence of it is and will you bother do it again.

And then the kind of, the difficulties of kind of ; I think a lot of the time this might not be a fuzzy area, but it’s you know it can, there’s a little. Some people would say there’s a usual suspect’s problem as well. So you, and actually how do you open things up a bit more to encourage and engage more people with I think that’s a real, a real challenge, a real issue for people to kind of tackle really because it’s sort of, you know, it’s not really about representativeness, it’s just more that actually you know, people can only, might get tired of being involved after a while and actually you need to, you know, keep the pool fresh really for that reason.

And do you give people feedback about the sort of the difference that they’ve made as they go along?

Yeah, yeah, no I think, you know, giving people constructive, you know, acknowledging when people are doing things well. And, you know, gently trying to pick out, you know, where things could be done differently and I think that’s an important part of it and equally it should be reciprocated and parents I give them free rein to tell us when we’re doing things wrong and what we could do differently, you know. One of our parents suggested, you know, you should give out, well you should give out certificates where people have been involved in projects because, you know, some of these parents have been out of work for periods of time and if they want to go back they want some documented evidence of what they’ve been doing. So yeah, I think, I think, I try to create a culture within our research group with the parents where it’s very two-way.

And, and they seem quite willing to tell me where we could do things differently and I think that’s great.

That’s good. And if you do have to give any sort of constructive feedback, you know, maybe something that’s a wee bit tricky how do you find doing that?

Oh it’s always a very challenging thing in any sort of circumstances you know, as a line manager or a friend in any circumstance, I think it just needs to be done sensitively, if at all. I think there’s an element of choosing when it’s appropriate or not. I think in some senses our parents provide it with each other. I think, you know, occasionally someone will have an issue that they really want to sound off about and that’s OK and then the group will round them off and sort of come back on topic again. You know, occasionally I might have to sort of moderate a discussion to get it back on topic from my point of view and, but try and do it in an easy way, you know.

Rather than an overly officious way.

So yeah, I think it’s just moderating those sort of occasions, are a common example of needing to just sort of steer the activity or steer the discussion to keep it on course for what we, as a group, are trying to achieve.

It’s a long time ago when there wasn’t much written about it and we really had to find our way. So I’d say probably 2002/2003, started to do some research around young people with diabetes. So at first young adults with diabetes, 16-25, commenting on the services they’d received to develop our services within the healthcare trust where I work. And I felt strongly that, you know, that the whole research was qualitative so the subjects were young people, the data was going to be from young people, so I felt really strongly that actually we needed young people in the governance of the research as well. So started very early on and sort of very small steps at first and had two young people on our steering panel. And then working out pretty much for myself how to go about that. INVOLVE was then called I think Consumers in NHS Research or something like that. So there was some early guidance from them which was really helpful. Things like, you know, providing a glossary of research terms which I have to say was useful for the, you know the professionals around the table as well as the young people, you know, so that was a shared document as soon as I created that. And thinking about, you know, a job description for young people too, so that they could come to the table understanding their role.

But again equally it was a very useful document for the professionals to then understand what the young person’s role was, made the professionals have to think more carefully what their role on the steering group was to be able to explain it to young people. So it was, it was a steep learning curve and I’m sure we didn’t do it all right first time round, but that’s where, where I first started thinking about this and then I hope that my practices developed from there. So now in the research project that I’m working in now we have a group of, it’s about 20 young people signed up to the group about eight to ten attend regularly our monthly meetings and they’ve been involved in the planning defining the research questions, designing the research tools. They’re in the warp and weave of the management and governance of the research project. Again I’m sure we’re, you know, not getting it all right, it’s still a very, you know, there’s a lot, a lot to think about and as researchers we’ve still got to get some stuff ironed out and get it right. But I hope my, my vision and the scope of what I’m doing in terms of involving young people has grown over the years, so that’s where I’m at now.

You do have to look at what other people have done before. You know there’s no point in keeping reinventing it. So no I don’t think that’s too much of an issue. One of the things I think which isn’t, which people tend not to go into enough, including writing the funding proposals, what they’re going to do, is really thinking about what the different processes and structures are for, you know what you’re trying to achieve by that. Which is important not to waste your own time, but it’s also important not to waste other people’s time. Because if you know, someone gets involved as a lay person sitting on a meeting and they’re thinking, ‘Well why am I here?’ then it’s demoralising and makes no sense. So yeah it’s, I mean it is tricky because you’ve got to be kind of realistic about why people are involved, but I mean that’s part of the recruitment process and bringing people in to really set out this is what you may have a chance to influence; this is what you won’t have a chance to influence. These are the points where you should speak up you know to really work with people to spell all that out.

And yeah I would say, you have to be a bit careful about this, but looking at the range of people we have there are some who I find much more productive and helpful than others, put it that way. There’s something quite interesting about the process of involving people because it’s quite a formal set up and people get paid an honorarium it’s, you know, quite a decent rate. It’s a hundred and forty pounds a day, something like that so it’s not bad money, plus travel expenses and all the rest of it. So you know if you think of this daily rate, if that was your job that would be a good daily rate. But we don’t have any kind of selection process as such so, you know, if you put the call out it seems to be whoever kind of puts their hand up first gets the gig and sometimes you think, ‘Actually maybe if we, in some ways we’re treating this like a job, we should go to the next step and really sort of interview people and what’s your relevance and experience to this study and de de de?’ But then once you start doing that you’re emphasising the power of dis-balance again. And it’s, you know, we have the control over whether you take part in this or not. So it’s, I find that quite a tricky issue really.

Yeah the other side I guess of the whole paying people for being there, you know what’s, there’s a question about what you expect of them. So if someone is paid to come to a meeting and sits there and doesn’t say anything, is that OK or is it not OK? Maybe they were taking it all in and they’ll talk to afterwards; maybe they didn’t find there’s anything relevant to them or maybe they were just, you know, tuned out [laughs] in which case should they really get the money? I think we rarely get people sitting there and saying nothing but

I’m wondering if we should have more of a kind of contractual relationship with them but then you can’t, you can’t sort of say, “Sign this piece of paper to promise to say three useful things per meeting,” I mean it doesn’t work like that does it? So I guess we just have to accept it.

So yeah, in the Research Design Service we’ve developed these payment mechanisms so that people can actually get some financial support to do the PPI before they get their research funded and – And I think what I’ve quite enjoyed there is tackling the bureaucracy because it kind of feels like if you can get through the payment mechanisms, you’re sort of putting your money where your mouth is, you know what I mean? It’s evidence of some commitment and organisational support. And it does, it can really take some doing and that probably sounds a bit geeky, but I’ve quite enjoyed that problem-solving element really to feel that that’s a way of demonstrating your principles and if something is important then you can find a way to make it happen.

And what sort of obstacles did you face with trying to implement that plan?

Well not, not many because I haven’t necessarily had direct personal responsibility for, for implementing these plans. But we’ve had a lot of support to overcome obstacles from people like administrative staff. Their roles can be quite vital. They’re behind the scenes, but if they’re the people that ensure that people get their payments on time, then they’re actually vital to demonstrating respect really. And then there have been, yeah there are some obstacles about the way in which universities might expect to set people up on a, an employment contract in order to process the money through the payroll systems so that, that can feel like an obstacle and it can be an obstacle for members of the public that don’t understand or might even be frightened by some of those very bureaucratic formal procedures.

I suppose especially if there’s implications for benefits or issues around benefits too.

Yes.

Have you encountered that?

Yes, yeah. In fact because I’m a member of INVOLVE I’m actually working with them at the moment on that topic so I was on a telephone conference yesterday and revising the payments. And there again, as I say, some people have got specialist knowledge and so there are people that are updating the advice on welfare benefits and so it, it can be complex and challenging. And I think yeah that, that there are obstacles. But I think from my experience working at a sort of organisation on an institutional level means that you can put some systems in place and I suppose that’s where if you are encountering perhaps novice researchers or people that have not done it before you’ve got to do a certain amount of hand-holding to explain how, how these mechanisms work really.

No again I think that, you know, we try and involve families in all aspects of our research and our associated activities. I think it’s, you know, there are challenges to involving, in our instance, parents and young people in every aspect of their research, but they’re not insurmountable. You know, even in dry academic activities like systematic reviews we’ve involved people in framing the questions, where we might look for evidence other than in the sort of standard databases; our inclusion, exclusion criteria for the review. One parent was even particularly keen to do some searching so we enabled that. Then there’s reviewing what you found and interpreting it and telling people about it at the end so we’ve had parents presenting with us at conferences either about their being involved with us in the rationale of what we’ve done, but equally at other conferences telling people about what we found in substantive research projects.

And, you know, in generating research questions in co-applicants and funding and doing just systematic reviews, qualitative research, surveys. And not so much myself but other people in well actually yeah no in designing a clinical trial that wasn’t subsequently funded but there was a father who was, was very keen, and again travelled quite a distance to come and have a couple of meetings with us. And people have reviewed documents by email so, so I think yeah, no I think people could be involved in every part of the process if the opportunity is presented in the right way. For us, the awareness is around how much individual people might want to be involved so not everybody has the time or the inclination to want to be involved in every aspect. Some people, you know, and that might change over time so I think that flexibility is really important as well and not having a contract where if you said you were going to be involved then you have to do this, that and the other, you know, as I say, working with families with disabled children you do need that flexibility and that light dip in and out approach. But then to be ready when somebody really wants to invest more time in it and then work harder ourselves to enable that opportunity.

Well I’ve just talked about relevance and impact being the reasons to do research.

Yeah

But in terms of recording it.

Recording it yeah

Recording impact, I mean it. I suppose an awful lot of people are not very good at tracking or recording what happens when they do something. So I’ve been, this morning, at a meeting for a patient and public involvement advisory group for one of the NIHR biomedical research centres and they’re trying to identify and understand whether they’re making a difference. And the NIHR programme reference group I’m part of and now co-Chair, we’ve also been doing the same thing and you just simply need to record it because unless you say, “Well what did I do; what happened afterwards?” you’ve got no chance of knowing whether what you’re doing is actually making any difference or not, or whether actually it’s just good therapy and you’re all talking together and that’s great, but actually it doesn’t do anything. And because public involvement is what’s called a complex intervention, because we’re all different and we all interact with people differently and we all have different perspectives and views and there’s that other complication of representativeness are you there for you or, are you there representing other people? Sometimes it’s one; sometimes it’s the other, sometimes it’s a mixture of all of them. But, ultimately we need to try to, we need to try to measure things, you know measuring’s important. It might be seen to be dull and anally retentive but, actually it’s, you know if we don’t measure what we do in the same way as, you know that’s why you do research to measure things. You know, you measure outcomes in research studies, it’s what you do; it’s the only way you can make, you can measure if you’ve made a difference. And we have to find ways of recording what we do and seeing whether it makes a difference or not and then changing behaviours accordingly.

Well currently we, we run the young people’s group on a Saturday and the researchers come in and they work with them. And we ask them to we’ve put a system in place really where both the researchers and the young people get an opportunity to assess how it went if you like; how did the involvement go? And, one of the things we did with the researchers is after the session and the researchers are at the sessions, we write a summary and we try to do it that the young people have a bit of time to discuss and debate some of the issues and then they try and raise three or four main things, main important things, they want the researcher to take away. And myself and the youth worker will always write that up and send that over to them and say, “This is kind of a summary of what has come from your session.” And then about a month after that we follow that up with a reflections questionnaire, just asking the researcher to reflect on what the young people have told them. Have they been able to use their views? How have they been able to use their views? And also we get the young people to do a quality assessment where we ask them what they felt of the involvement activity they ran with the researcher and how that could be changed. So we’ve got those two kinds of processes of assessing in place.

And then it’s easier for us to track what the young people have said and what the researchers have responded to it. So we’ve had some instances where it’s not been possible for the researchers to take on what the young people say. But I feel like the young people are happy as long as we go back and we say, “This is the feedback and these are the reasons why we can’t take up this idea of yours.” And I think it’s kind of sometimes researchers feel, “Oh I can’t do it so I should just like not tell them that I can’t do it.” But actually I think the young people respect the researchers more when they do come back and say, “We can’t do it and these are the reasons.”