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Researchers' experiences of patient & public involvement

Skills needed for involvement

We discussed with researchers what skills they felt they needed to work effectively with patients and members of the public. Ceri and Eric summarised many of the skills identified by their colleagues as: ‘ability to listen, courtesy, humanity, open-mindedness, communication and person skills, a little bit of caring nature’ and a ‘willingness to translate… to take what people say and think, “Actually how would this be useful?”’

It is perhaps obvious to say that researchers need good communication skills – importantly including the ability to listen as well as explain things in accessible language – but as Rebecca noted, such skills don’t always come easily or naturally, and extra training may help. (See ‘Training needs for involvement’). Valerie suggested this was one good reason to have a professional PPI co-ordinator who can bring some of the facilitation skills and experience researchers may lack, and Bernadette recommended using external facilitators in some situations, who might ‘make things more equal’. At the same time, Sabi suggested researchers themselves are best placed to explain their research and can’t really delegate that to a coordinator. (It was evident that people designated as PPI leads or coordinators had very different roles and levels of seniority – some might be very hands-on while others fulfilled a more strategic role. See also ‘Organisational support and leadership for patient and public involvement’.)

 

Researchers need communication and interpersonal skills; flexibility; creativity; and not rushing to judgement about what someone is trying to say.

Researchers need communication and interpersonal skills; flexibility; creativity; and not rushing to judgement about what someone is trying to say.

Age at interview: 50
Sex: Female
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So being able to walk between worlds of the, the world of the researcher, the academic world, the clinical reality world as well as the world of the patient, the carer, the lay person who has had to become part of the service. So I think that’s really, that’s a really important aspect which is why I'm saying, you know, don’t leave it to the most junior member of the team. And then obviously communication and interpersonal skills are really important - being facilitative and, also people are quick to rush to judgements that people are uninformed or people's, people are forever talking about their experience and it's not, you know, “yeah we don’t want to hear yet again about, you know, what your experience was.” Maybe, you know, the patient/public involvement person who's on your team expects to be telling his or her story all the time because that’s what they’ve been told. Invite them to think differently or to contribute in different ways – that might be more, that might move the team forward. And I think that’s quite important not to rush to judgement about, and say, "Oh people aren’t informed or, you know, they don’t know what this is about." 

Give people a chance and think about the contribution they make and not just in which way it is helpful, unhelpful, but in which way it is helpful so not rush into judgements; not rushing to close things down all the time because you’ve got a deadline to meet. I think, you know, that’s important – those are sort of human skills I suppose. And I think communicating very complex scientific issues in ways that can be grasped by the non-expert, by the lay person, and that’s a really difficult skill, you know – writing lay summaries, communicating complex concepts in ways that people can grasp and work with is hugely important. And sometimes people hide between jargon; hide behind the complexity of their work rather than talking in a facilitative way about it. 

What other skills? Creativity – you know, I think you need to be creative to design ways of involvement that are meaningful, not just for the project but potentially, you know, allow the person who you are involving to thrive and develop his or her community or social network to think about research because he or she will go back and talk about positive and negative experiences and if they're positive experiences they're likely to help others, also volunteer to participate and I think that’s important.
 

Valerie says involvement is about being personable and a good communicator, putting people at their ease and building their confidence. Having an involvement coordinator helps.

Valerie says involvement is about being personable and a good communicator, putting people at their ease and building their confidence. Having an involvement coordinator helps.

Age at interview: 39
Sex: Female
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So in terms of skills she has to do that role; it's about being, it's about putting people at ease, it's about being personable, knowledgeable, communicator really and being able to tell people about what we do and how they might get involved in that if it's of interest to them. And I mean that’s, those are the skills that I think are probably essentially about being explaining to people what you're trying to do and how they can get involved in taking that forward. But it's quite... I guess most people don’t have access to a co-ordinator, a family involvement co-ordinator that does that. But I guess the skills are pretty much the same – plain speaking – that would be, is a key skill I think and just being. Putting people at ease is a big, is a really big thing because and for a lot of the parents that we meet and I don’t know if it's the same for other groups but they’ve had a real knock in their confidence and their lives have changed a lot since they’ve had their children. And they may have given up work and there's all sorts of, you know, confidence issues that are going on with them and I think what's, it's really important to be able to have them value their input as much as, you know, they add to the research. But, you know, you quite often get comments like, "But I'm just a parent," and. So it's the person's skills to be able to make people feel valued once they're here and able to contribute and… which we just try to do by being friendly and just letting people say their piece you know and it just, being normal people [laughs] which is not a skill all researchers and academics have I have to say so maybe that’s it - that’s why we need an involvement co-ordinator.
 

Jen knows that making her speaking and writing style simpler and less full of scientific terms is an important skill, but it’s hard.

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Jen knows that making her speaking and writing style simpler and less full of scientific terms is an important skill, but it’s hard.

Age at interview: 29
Sex: Female
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It’s taking a step back from yourself as a scientist and thinking about how it would be if you were receiving something like this as a member of the group that you’re planning on recruiting?

And is that easy to do?

No, no it’s not easy, especially when the majority of your working week is spent writing papers and giving conference presentations, you know, you kind of switch into this alternative way of speaking, of writing - taking a step back and thinking about doing things simply and clearly can be actually be a lot more difficult than it sounds. And I just mentioned that I was talking last night about writing a lay summary of a paper that I’m about to submit, and it’s that kind of thing which really does make your take a step back and think ‘how do I explain this simply?’, you know. Is there really any need to be so complex sometimes? And it’s actually quite nice if you’re just explaining a study that you’re running to a friend who doesn’t come from that kind of scientific background…

I mean sometimes it can be something as simple as just outlining a concept. If I may be struggling with describing something like that in a paper I find it easier to have a discussion with someone who doesn’t work in science or come from that kind of scientific or academic background to discuss the issue with them, and then I find it almost clarifies things in my mind from describing it simply. It can be really difficult to describe things simply and I think sometimes it’s very easy to hide behind complex terminology because you don’t fully understand it yourself. There’s nothing like trying to explain things clearly or teaching something to really solidify things for you…

I can only speak for myself but changing your style of writing, I mean that can take a lot of mental effort. I find it difficult because when I read something which I think I’ve written fairly simply it’s not necessarily that simple still. You find you use, you know, what I see perhaps is a simple piece of terminology that still makes something inaccessible to someone that doesn’t necessarily come from a scientific background. So even though I feel like I’ve done a good job and I, you know, I realise I do this because when we were going through iterations and I was working the participation manager I’d write something which I thought was fairly simple and I would send it to her and it would come back with these red track changes 
 

Involvement is all about building relationships, making it interesting for people, and helping them recognise their own expertise.

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Involvement is all about building relationships, making it interesting for people, and helping them recognise their own expertise.

Age at interview: 56
Sex: Female
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It's all about building relationships, it absolutely is. You need to be able to build relationships; you need an enormous amount of enthusiasm for it. You need a great big thick skin to deal with organisations. You need to not worry about having big eggs on your forehead because you'll have been knocking on brick walls with your forehead. It's not an easy line but the skills of actually doing it with the people it's about, it's definitely relationships and it’s being able to facilitate something and taking yourself out of it. It's really hard sometimes, especially the more you do it. So you’ve had experience of everybody learning before and you kind of want to make people get to this point because that’s where you’ve got to go, but remembering they can't go any faster than they can. 

But relationships are the core of it; if you haven’t got a good relationship it’s hard work and people will just be out the door. Yeah I don’t think there's anything I can add to that. Recognising expertise; recognising their expertise. Sometimes recognising it for them, because they don’t even recognise it themselves. They’ve spent so long being a person with learning difficulties, knowing that they're actually good researchers, knowing that they really can see right through to the issues - they don’t get it themselves. So I think being that person that also spots people's expertise is important as well and it's great, it's great when people recognise that they can do this stuff and not only that, they're really good at it. Or as they, as the men finally pointed out they were better at it than I was [laughs], which was true. 

We used their conversations – the way they understood things - to teach the next lot of men. So when we were talking about confidentiality and anonymity and that it wasn’t just not saying people's names and we had all that discussion, then suddenly one of them said, "Oh I get it," he said, "it's like if we said, "Well the woman in the room with grey hair said." They said “And everybody would know it was you”. And it was spot on, he'd got the concept now of anonymity/ confidentiality not being just not having your name; it was more than that and that lead us into some great discussions. Then we used that in the training because here was the woman with grey hair again and the men, and my colleague has beautiful dark black hair and so I was the one that stood out, so he'd got that. 
Alongside good communication, several researchers stressed the importance of flexibility, creativity and keeping an open mind. It was acknowledged that sometimes there were difficult conversations to be had, to prevent people from going ‘off-topic’ or handling a situation ‘if one patient is much more vocal and is taking over’, as Fiona put it. However, Sabi, David and Andy noted that sometimes people may be saying something more useful than it may appear at first. Good chairing and facilitation were key skills identified by many of the researchers we spoke to.
 

It’s important to involve a range of people. David says good chairing is essential, along with careful listening to the points people are trying to make.

It’s important to involve a range of people. David says good chairing is essential, along with careful listening to the points people are trying to make.

Age at interview: 49
Sex: Male
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And so what else does it look like? It looks, in practical sense, when you actually come down to doing it – choosing the right people, and people choose themselves as well. That’s ever so difficult to manage because you do tend to get the same people cropping up. Some of them are brilliant and you want them, but you'll get the same flavour all the time. It's good to have different flavours and different approaches. You have to be very patient because the way that we talk sometimes in science is very different to what patients can speak like, and you have to be able to translate. It's almost like listening intently; i.e. you're not particularly good at the language and someone is speaking in your language, you go to another country and you and I might just talk very comfortably. Whereas if somebody's not speaking in their first language you have to listen a little bit more carefully. You have to do that with PPI, because people are telling you things. They could be very important that you could miss them. You have to have this sort of interpretation mode on all the time. [Loud engine noise]

The other thing I have to do is not be afraid of opinion. People can have opinions, and if you're somebody who's going to be scared of listening to things and achieving a quite – sometimes forcibly [sometimes not] –opinion about something you have to be careful and accept that. You need excellent chair people for PPI meetings that you have so that they can cut through things which are unnecessary, but pull from the things which are very important. You need to incorporate the PPI and whatever it is. Again it's a slightly abstract notion. But when you’ve got the information which has come into you, whether it's on outcomes, whether it's on the research question, it's how you're going to go about it you need to incorporate that into grant writing or your project, protocol or description right from the start. That makes it much better. I see things all the time as a reviewer, and there's clearly bits which have been written by the scientist and the clinician, and there's bits, which is, 'Oh this is now PPI.' The better ones that are coming through now have a beautiful amalgamation of the two, and they, you know they speak to each other.
 

Sometimes researchers are too quick to dismiss what someone is saying as irrelevant or too personal. A good involvement facilitator will listen out for important points.

Sometimes researchers are too quick to dismiss what someone is saying as irrelevant or too personal. A good involvement facilitator will listen out for important points.

Age at interview: 49
Sex: Male
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But I do think there’s a particular skill in being able to span those two worlds, the academic research world and the, and the lay world and to act as some kind of translator between the two and I think there is something there that’s a particular skill. and when I’ve seen it done well you can see that somebody A) who is facilitating very well is attentive to what is happening in the room, so they can see that somebody’s looking a bit unhappy or a bit left out and are able to draw them into the discussion in a way that’s helpful and supportive and doesn’t put them on the spot. And are also able to listen to what patients and members of the public are saying and it does often, because it’s experiential knowledge it comes backed up in a whole array of stuff, some of which is highly specific and personal to that person but actually in there is also something that’s kind of very important to take into account. And those people who do it well can listen and can see, can hear in what’s being said what’s, what’s important to learn from that experience and what might be really important for the research. And I think sometimes because things are often expressed in just lay terms it’s very easy for somebody who’s not listening to dismiss it as just somebody going on about their personal problems. And I think some of the good facilitators can listen to that but they can, they can hear what’s really, something that’s very important is being said, that somebody else who’s not listening so attentively or hasn’t got that skill, just can’t, can't hear.
 

Chairing and facilitation are key to good involvement. Pam recommends a training course in chairing, and bringing in others with good facilitation skills.

Chairing and facilitation are key to good involvement. Pam recommends a training course in chairing, and bringing in others with good facilitation skills.

Age at interview: 54
Sex: Female
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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.
 

It can be hard to chair when people are not used to formal meeting processes, but it’s up to researchers to communicate appropriately and find other more flexible approaches.

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It can be hard to chair when people are not used to formal meeting processes, but it’s up to researchers to communicate appropriately and find other more flexible approaches.

Age at interview: 55
Sex: Female
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So, they’ve come in with a specific experience. I mean everybody's got their experience including us as researchers. But they come in with their experience and we want them as service users. But they’re sitting around the table with a lot of people who are professional, who are used to sitting at meetings all the time, and are used to sticking to an agenda and talking when they’ve got something to say generally, and not hogging the meeting. And often service users, they don’t have that sort of meeting discipline. Well why would they? But it is quite hard to handle because you get other people round the table rolling their eyes and getting bored and then not coming to the next meeting. So I'm often chairing meetings because I'm a chief investigator quite often, not always, but quite often I'm chairing meetings, and I make a great effort to be inclusive. So I'm very clear that people shouldn’t use jargon; I'm very clear that everybody is to communicate at a level that everyone can understand. Sometimes I forget, but most of the time I think I'm much better at doing that than a lot of people. Because when I'm sitting in meetings with other people chairing, I think, 'People around this table are not going to understand all this stuff; you need to speak in a language that’s accessible to everybody.' People don’t. So sometimes service users are sitting there very excluded. Well, I don’t think we do that on my projects, we include them. But then there's a sort of thing that they have to take the floor even if they haven’t got anything to say. It's like they're being paid so therefore they’ve got to say something, and they tend to talk a lot. So it's quite difficult to manage staying on the agenda, staying relevant, and I think chairing is really important. So you have to include everyone round the table. But it is different with service users because they're not professional; they're not usually, sometimes they are, but usually they're not people who are used to that environment, and sort of can manage that environment. So, here's another example. We might have a meeting where we've got a very senior health service manager or a policy colleague from the government there. So, this is a perfect opportunity for a service user to make their political points which are nothing to do with the project. And then the government person feels completely harangued and doesn’t want to come next time. These are all issues that we have to manage.

And so what are the skills that you, as a researcher, need in order to involve people?

Communication, clarity, inclusivity – those things…

If you're doing a project about people with, I don’t know, learning difficulties or something – how do you, how does that work? Or kids, or people, say, from deprived backgrounds, where people don’t tend to have those skills of articulacy – is that a word? And able to, yeah, just the following of an agenda and sticking to a point and all those things. So then I think we have to be really flexible about the way we involve people and. So, for instance, we might have panel of young mums or something; or teenagers, or even we've done these projects with older people that fall. To have an eighty or ninety year old person that’s had a fall, sitting at a meeting with twenty people or two of them, a lot of it is completely boring to them anyway because we're talking about, you know, getting service support costs or excess treatment costs or blah, blah, blah, which actually has no relevance to the operational requirements of the project, are really not relevant. But once you start excluding them from some bits that’s a fine line. So, but if you invite people who spend two hours around a table, that’s a lot to ask of someone that’s got chronic conditions or is frail. So then we have to be trying to involve people in other ways and that might be a separate panel, it might be a community health council, it might be going to see people individually in their homes. And what I find, as a research lead, is that it falls off the bottom of people's agendas all the time. So we might have them in the research management group, yes, but this real involvement thing I make it a standing agenda item on every agenda…

But, I have to push, push, push, push because people don’t see it as the same priority as they do other things on their lists. 
 

Rebecca reflects on managing difficult conversations and emotions, and ensuring everyone gets a chance to speak. Junior researchers may lack confidence to manage conflict.

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Rebecca reflects on managing difficult conversations and emotions, and ensuring everyone gets a chance to speak. Junior researchers may lack confidence to manage conflict.

Age at interview: 31
Sex: Female
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If someone's sort of dominating the conversation that can be quite difficult how to facilitate the conversation, like any meeting, if someone sort of spends twenty minutes talking about whatever their issue, their thing is and you’re thinking, 'Well if you’ve got this whole agenda or we've got where we need to get to,' that can be quite a challenge when you don’t want to offend anyone and stop them talking, because you want to hear what they’ve got to say. But at the same time you might have eight other people and you want to hear what they’ve got to say. And so that’s another difficult conversation to have. And also if it's very emotional which that often links into as well. If it's a very emotional topic that someone's, we're talking about someone's condition or their lives or their communities and obviously it can be upsetting. I mean it can be very rewarding talking about it, but it can be sort of bring up other things, so you’ve got to kind of balance that and manage that…

I think advanced planning helps manage expectations as much as possible. But, like with anything, with anybody, you can give information and, you know we give out information sheets all the time or we send out emails. We receive a lot of emails; how often do we read everything in it and then remember everything that’s in it, given everything else that we do? And that’s exactly the same. So having it down and writing helps because you can refer to it. Setting it out in discussions at the beginning can help. Again, so that way it's not just in writing, you know that whole adage of don’t just write something; you know, give it two or three different ways because everyone learns in different ways and remembers things. So saying at the beginning and setting ground rules can be useful although can be quite difficult because that becomes quite formal and it depends on the tone and relationship you might have with the partners. So if they're people that you don’t know and you're working with them for the first time maybe it's more of a consultation. You just want to get their ideas and – then that can be really useful but at the same time it might sort of change the tone a little bit. So, which is something you get through experience but it can no matter how much experience you can always go wrong. 

And so I think certain ground rules but then also, with the best will in the world something can upset somebody which you completely unintended consequence that you couldn’t foresee, and then it's about how to manage that, how to help resolve the problem which is a skill and it's a skill that’s taught… It's something I'm keen to bring into our training is how to manage difficult conversations, because it might be a difficult conversation about money but it might be a difficult conversation that someone's getting upset about something. And it might become quite challenging – I'm trying to think of another word to ‘difficult’. It's just unintended consequence – someone gets offended and it's how do you resolve that and that sort of constant management. But often you can be a little bit sort of blindsided with that because you don’t expect it…

And so yeah, you need training for that; you need that skill of how to sort of identify the problem, identify how someone feels about it and think of how to resolve it so it doesn’t happen again. That sort of process, which is a management sort of process of handling conflict, is really important to teach to people and people who are often maybe doing PPI, the involvement work in the beginning, often want junior members of the team and they might not have had that training or might not feel they have that confidence to use it. So that can be another challenge. You'd want to make sure everyone's comfortable and happy but that’s sort of difficult.
One of Rebecca’s tips was to do some advance planning and set ground rules, though at the same time wanting to maintain flexibility and informality. Kristin described how her early attempts to be informal in involving young people had not been as successful as she hoped, and she now tries to make it more organised and structured. However, Hayley described the importance of her youth work skills in making meetings engaging, informal and not too much like school. Chris stressed the importance of just being hospitable.
 

When she first started involving people, Kristin wanted to keep it informal, but it made meetings less effective. Now she is more structured and organised.

When she first started involving people, Kristin wanted to keep it informal, but it made meetings less effective. Now she is more structured and organised.

Age at interview: 42
Sex: Female
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So I didn’t have any sort of teaching experience or anything like that. So they were probably a bit sort of, ah I don’t know, they changed in character. So the first few I tried to be very, very informal and do it like a focus group and then I felt that that wasn’t really working and it needed a bit more structure, a bit more clarity about what it was that we were trying to do. And so then I remember the first time I was more kind of directive I did something that I called like a facilitated debate. So I said, "OK at last meeting there was quite a lot of disagreement about what topic we're going to choose and I thought today, how about we split into two groups and each group try to think about arguments for a topic, the two most popular topics?" And then they did that and they needed a bit of help with that too in terms of what did I mean about an argument and all this kind of stuff. But then they kind of played it out and they really; afterwards I got quite good feedback on that, that was quite fun. And I think it's how all of us, you know break down the topics, so why is education important or why is drugs; why is it important not to take drugs you know. And then after that I tried to be more and more directive, not in terms of what we were going to choose but kind of how the discussions were organised and; so more and more break out groups where they kind of talked between each other and then came back to the main group. But it depended on the size, so sometimes we'd just sit around if there was only two there; so three with me, we'd just sit around and talk it through and if it was more, because I tried to be as flexible as possible, and yeah, yeah. 
 

Hayley uses her youth work skills to make meetings engaging and ‘not too schooly’. She describes some practical strategies for making them inclusive.

Hayley uses her youth work skills to make meetings engaging and ‘not too schooly’. She describes some practical strategies for making them inclusive.

Age at interview: 30
Sex: Female
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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 practically the meetings, we run them for three hours, they're actually run in the university. And when we first recruited the young people I was quite conscious that some of the young people we work with may never have been to a university before because of their age and they may not even have people from their family who had been to university before. So I thought, 'OK there's going to be quite an alien concept for young people coming into a university'. So we set up the first meeting with when we did our recruitment as a welcome meeting. 

So we had a session which was about research and they looked through our research report. But we set it up in a way where we did some icebreaker activities. The young people got to know each other; they got a flavour for the kind of icebreakers and stuff we'll be running. They got a flavour for the kind of what we mean by we want them to be involved in research. 

…We have had to kind of think about some things. So the way we set it up we're hoping it was the best way possible but we always have this, and we've started in sessions having something what we've called the car-park. And the car-park is basically a piece of paper on the wall and we're conscious that the young people what we're doing is we're sometimes taking project ideas to them and they're not raising their own ideas at the point where the research is coming in. So we've got a car-park and if they’ve got any issues they want to raise we write them on there so, strategic issues they'll go to – we've got a public involvement steering group which is run, which is researchers and some practitioners here. But also they can put up some other issues about how the group is running and any operational stuff I'll think about. 
 

Chris never had any training in involvement but his advice is to treat people as you would like to be treated - with courtesy, hospitality and a friendly welcome.

Chris never had any training in involvement but his advice is to treat people as you would like to be treated - with courtesy, hospitality and a friendly welcome.

Age at interview: 48
Sex: Male
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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.
 

Rebecca has always found that if you are open and friendly with people they will help you work out the best way to involve them.

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Rebecca has always found that if you are open and friendly with people they will help you work out the best way to involve them.

Age at interview: 31
Sex: Female
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And I think meeting regularly - not all the time, because I think that can be a concern is actually it becomes almost like another job, because people have other things going on in their lives. But so meeting often enough that people felt they got to know everyone, but not so often as to be like, "Actually I can't do it next week because I've just been there a couple of weeks ago." And we just asked people. I think some people – having talked to other researchers about public involvement – [researchers] get sort of worried. And so like you just ask, what do they want to do? And everyone I've ever worked with has always been like they’ll tell me, you know. And I think that’s important, it's that communication – it's just being friendly. I know it's a work setting and we're being formal at work, and we want people to be involved and there are places where that should be formal. But there's other times, particularly in building relationships, we're saying, "If you're not happy, or something's not working, just we'll talk about it." And make sure we kind of come back to that and not leave it as once, because that can be an issue I think. Someone's going, "Oh you're welcome to talk to me," and you never say it again and people go, "Oh," and it can build. 
Several people commented that although checklists and guidelines for involvement can be helpful, there is no one right way to do it and that learning from both one’s own and others’ real-life experience can be invaluable. (See also ‘Learning from experience of involving patients and public).
 

There is little consensus over what good involvement looks like and a lot of reinvention going on. Suzanne would like to see more opportunities to learn from others’ experiences.

There is little consensus over what good involvement looks like and a lot of reinvention going on. Suzanne would like to see more opportunities to learn from others’ experiences.

Age at interview: 40
Sex: Female
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I think there's a bit of awareness raising needs to go on. I think it's something that’s. There's a lot of guidance out there but that’s because we're looking at a bunch of it for various other reasons recently and there's a lot of guidance, but actually not a lot of experience out there which is probably why it's something quite useful. So I think that’s the, that’s the trick really because as a researcher you read this stuff and, you know you read a document and it's got a link into it, another thirty page document, a link to another thirty page document. But actually where's the example of someone who's done this and the difficulties that they had and all of that sort of business rather than, I don’t know, than just this you know, voluminous document with links in it. Yeah so I think there is, and I think there is – it's a difficult one though isn’t it because it's sort of finding enough capacity amongst researchers who have involved people to kind of delivering something, so there's an issue around that and then there's obviously there's so many different schools of thoughts about what's good practice as well and so I think there's an issue there as well. Because you know somebody might be, you know, saying, "This is amazing blah blah blah." But actually, you know there’ll be another group over there who think this is the worst idea since sliced bread. So I think the idea is it's quite a fragmented area, that’s been my sort of take on it. 

And I think it's, so it's quite hard to get kind of consensus over things you know and whether you should be getting it or not I don’t know actually but, you know, but there's sort of, there's lots of kind of, I, it's a bit like a cottage industry type work going on so it's sort of people are, you know, kind of reinventing wheels in little silos when not actually talking with one another enough I think because you're sort of - And actually there's probably a lot of knowledge out there but it actually needs to be shared, or there needs to be forums or mechanisms by which they can share the main - I think a lot of the kind of involvement networks like, obviously like INVOLVE, and then there's the one in Wales as well, they, you know they used to do, have training, but it's something that there's not been a lot of money for, I think that’s been an issue as well. You know so it's sort of, you know and some of the work that other colleagues do here is giving advice on that to, you know, to researchers within the university who are, have got that bit in their application and they think, 'How do I do this?' So I think it's something that’s going to be quite hard to implement without funding, but also actually researcher's awareness that it’s something they want to invest their time in as well. 
Learning from experience also means learning from mistakes, and the ability to reflect critically on oneself. Several researchers identified the ability to recognise one’s own limitations as an important skill. As Bernadette put it, ‘You actually need to be humble and think “Well, maybe the patients know better than me what some of the research should be about”. And I guess you need a good analytical mind so that you can process all the information and sort of look at it objectively.’ Tom likened this to the shared decision model of care: ‘These days doctors are trained to say “actually I don’t know, shall we find out together?”’
 

Felix has been on a learning curve with involvement. He worries about it being done badly but recognises people learn by doing it. It has to be hard to be a true learning process.

Felix has been on a learning curve with involvement. He worries about it being done badly but recognises people learn by doing it. It has to be hard to be a true learning process.

Age at interview: 36
Sex: Male
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Over the years since you’ve been doing it has it been a trial and error approach or how have you sort of come to do the kind of PPI you do now? 

Yeah, yeah. I mean, yeah and I think it sounds a bit smart because here I am, you know, I didn’t know anything about it three years ago and then, you know, clearly it's a result of a learning curve this where I am today. And it's probably, you know, I want to allow other people to make those. You know, when I'm being so harsh about the unethical stuff, you know, I think I'm talking about the gatekeepers that could potentially have an impact on good PPI and could steer those things in a helpful way. Yeah because you want people to make those, and almost you know, you know I've got, I had quotes from people that say, you know, “good PPI is the PPI that hurts” you know. It has to and I would probably agree to that you know. It has to be a little bit hard sometimes you know, for it to a learning process. So, you know, maybe there is something to be said for people to just go and do it and burn their fingers. But I think it has the risks that they then walk away from it and kind of come up with a compromised version which says I prefer to keep them at a distance so I'm going to delegate it into a PPI group that I can consult at my convenience or not. And then follow on their advice or not and I'll make that decision and all the power's in my hand. 

Yeah so it's, you know, it's clearly a learning curve and hopefully to the, you know, to the better but, but that’s as diverse and as complex as people are diverse and complex and how they approach their lives and lifelong learning really and how much. Probably the more senior you get the less, you know, the more you have an established system and the less or the, or the easier, you know, to reduce complexity, the easier it is to stick to a routine and how you deliver. But like, you know, like I say I think it's a source of continuous freshness and validation, you know. Hopefully people would see it like that, you know, to say, "Well does that make sense, you know, what I'm doing?" and you know to, you know, their understanding that it enhances and it adds value to anything you do if you allow that to happen and that’s mm yeah. So yeah, and maybe I should you know; maybe people must do that and hopefully it'll change them for the better.
 

As well as being able to put people at ease, researchers need to be able to give up some control over their work and not bring set ideas.

As well as being able to put people at ease, researchers need to be able to give up some control over their work and not bring set ideas.

Age at interview: 26
Sex: Female
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I think you have to be, to a certain extent, I think personable – I'm not sure if that’s the word I mean, but you have to be the kind of person who can get on with people regardless of, and put your personal feelings or beliefs aside, for the purpose of the meeting because particularly with something like, you know, in the childhood disability world you hear about people who have done things and tried things that you may personally disagree with or think that are not right. But you have to sort of put those things aside and, what I meant by personable – got a bit distracted there – was kind of making people feel comfortable and like they want to work with you when they come to the meetings. I suppose someone who's able to put people at ease and sort of chat, you know, before the meeting starts to make people feel comfortable. I suppose the kind of person who is willing and able to give up some aspects of control over their work and is willing to let their ideas of how things go be influenced by others. So I think if you had really set ideas about, you know, you're the expert, you know what research is, and you know how this project's going to go, then really there's no point in doing PPI, it's not going to be successful. So you have to be able to be flexible to a point and accept that other people have ideas that may be different to yours but better or even just as good yeah. 
 

Researchers need self-awareness, openness and a recognition that they don’t know everything.

Researchers need self-awareness, openness and a recognition that they don’t know everything.

Age at interview: 52
Sex: Male
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Are there any other skills you think researchers need in order to be able to involve people?

Self-awareness essentially you know and it's. One of the things that you learn or researchers, that you'll know yourself, is a degree of self-confidence so you learn research – you know you learn what you learn so you learn research methods, you learn about the area in which you research and you learn, and you learn to be opinionated in the right way. So, you learn where to find out information, so you know how to do your own research and your literature research, your background, and to be assertive and to get on and do things. You need to be a doer to do research, but actually you need to be self-aware that you don’t know everything. So, that degree of self-awareness, it's like doctors, you know there's been a long history of doctors – you know doctor knows best. And my mother-in-law, my first mother-in-law was very much of that generation where doctor knows best, don’t need to know what the doctor's done so she had quite a lot of operations in her life and actually didn’t really know what parts of her body were still there or not because she didn’t feel she needed to know because that was the doctor's job which is quite strange, it's an anathema to me.

Whereas nowadays doctors are now trained to say, "Well actually I don’t know, shall we try and find out together?" So, they need to be, you need to be confident in what you know but self-aware and honest about what you don’t know. So, other than the relationship bit it's that self-awareness and honesty; sort of openness, transparency kind of thing.
 

Tom says researchers need to be able to be able to speak plainly, listen and be willing to give ground on things that are important to them.

Tom says researchers need to be able to be able to speak plainly, listen and be willing to give ground on things that are important to them.

Age at interview: 54
Sex: Male
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Skills. I don’t know about skills so much. There’s something about, you certainly need an attitude of thinking that input from those quarters is, is important. I suppose one of the skills you need, coming to me thinking about your question, you need to be able to speak to members of the public in language they can understand. You need to be able to listen to what they say and I suppose draw – well you need to be able to listen to what they say and give it proper consideration and recognise its importance. You need to be able to I don’t know. You need to avoid behaving like a bossy clinician when you’re discussing things with them and the way things should be run. You need to be able to give ground when necessary on things that are important to you and I’ve certainly had experience of that in this PSP. And you need to I suppose have the skill of, or insight to recognise you haven’t got all the answers. But neither have they. And you need to recognise that just because patients and carers are suggesting something it’s not necessarily the right thing to do. 

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