Andy

Age at interview: 49

Brief Outline:

Andy is responsible for patient and public involvement in research. He also conducts related academic work. He has been involving patients and members of the public in for approximately eight years.

Background:

At the time of interview, Andy worked with one of the Collaborations for Leadership in Applied Health Research and Care (CLAHRC). But he is now an Associate Professor of Patient and Public Involvement at a different university. Ethnic background: White English.

More about me...

When he was interviewed, Andy was working with one of the Collaborations for Leadership in Applied Health Research and Care (CLAHRC). The CLAHRCs are partnerships between researchers and NHS trusts, which aim to carry out research that will make a difference to patients and to healthcare. Andy was employed to develop a patient and public involvement (PPI) strategy. In his role he runs the PPI in the CLAHRC, advises researchers on how to involve people and writes academic publications on involvement. When he started, he set up a PPI group to advise on the running of the CLAHRC as well as other groups that were related to the different research projects that were being carried out. 

Andy defined involvement as actively working with patients and members of the public in doing research rather than as participants in or subjects of the research. He believes that PPI has a number of purposes and that it’s a mistake to assume everyone is doing it for the same reason. But he said that all involvement is likely to share a common goal of improving health research, leading to improved healthcare. 

However, Andy thinks that involvement is becoming more bureaucratic and complicate. He said there was a perception that it is common sense, something that any academic should be able to do. But researchers require a certain set of skills to involve patients. They should be good at facilitating group discussions and making sure no one is left out, and good at listening and interpreting what is important to people. 

Andy believes that people who get involved don’t need to be representative of the rest of the population or of all other patients who have the same condition. They just need to be able to share their experiences. He also said there was no problem with people being involved for a long time because understanding and developing skills in research doesn’t take away people’s illnesses or their experience of living through it. In fact, he believed that the experience and expertise people develop over time will make them feel more confident in their ability to challenge and contribute to the discussion with researchers. 

In order to assess the impact of involvement, Andy said it was important that what is meant by involvement is made clear because ‘if you’re not clear what your PPI is meant to do then how are you going to know if it did it or not?’ He also explained that if involvement isn’t well supported then it’s not going to look like it has much of an impact on research. He believes it helps researchers ensure they are addressing the issues that are most important to patients.

For Andy, involvement is about actively working with patients and the public in order to do better research that will improve health and healthcare.

Right okay so I tend to go with the standard NIHR, you know, INVOLVE definition about actively working with members and patients and members of the public and community members as well in the actual doing of the research as opposed to recruiting people to trials as research subjects or engagement as in telling people about the results from research. In terms of the purpose of the of Patient Public Involvement I think they’re probably almost as many purposes for PPI as there are people interested in PPI and certainly I think one of the mistakes that you can make is to assume that everybody is doing PPI for the same reason and I think one of the problems in research teams when you do PPI is that people are probably expecting to get different things out of it and nobody’s really explicitly addressed or explored it with the end result that at the end everybody might feel a bit frustrated because it didn’t quite deliver what everybody expected. I think its fine to have different expectations and different aims for you Patient Public Involvement you just need to be explicit about them. However having said that I think if we’re all pursuing completely different agendas there’s not much common ground so I suppose if there was a common ground to it then it would be that patient Public Involvement will lead to research that’s more likely to lead to health improvement to improve healthcare for people. And I think that is an objective, whatever specific objectives we’ve got that’s something that the academics and the people in the NHS and the patients and members of the public all feel strongly about, certainly within [CLAHRC], but that’s what we’re here to do, we’re here to do research that is more than likely, that’s going to improve healthcare and treatments and so on for people.

Andy prefers to accept anyone who applies to the involvement group and then match them with research projects. Interviewing may exclude people researchers think are ‘difficult’.

I initially at the very first stage wrote to a load of organisations and said, ‘We’re setting up the new group, would you like to be involved?’ And people volunteered. And by in large – I think we said, we didn’t say no to anybody. And then subsequently, if somebody wants to get involved in [involvement group], and usually we go out and do question generation workshops, you know, critically appraising research for lay people and things, all sorts of different workshops. So people come to us and say, ‘I’d like to learn a bit more about this’. That’s probably one of the biggest ways we get new members. But they just write a short paragraph about themselves, why they want to get involved…

And very few people have ever been refused. I think the only issues, again going back to the, we want a broadly representative group in terms of experience. 

So it might not be the case that if we already got a lot of people with diabetes and there was another person with diabetes, we might say, well, we wouldn’t say no, but we would create a waiting list or something like that and say when an opportunity comes up. 

It’s occurred to me that I’ve tried to make it as much as possible a real decision. So just to say to people, ‘I don’t have an involvement in that part of the process other than facilitating that it happens and making sure that it happens, so that somebody who’s asked gets a response quite quickly.’ But I have tried to say to people, ‘If you really have a concern about someone, then do say. Don’t just think that this is a – it may be that you’ve worked with this person before and you’re worried about what impact they might have or so on.’ But I think it’s quite important that we don’t interview because the other issue about the professionalisation thing, which again is not really about professionalisation, but is like picking people who will go along with you. So if I interview you – and I have heard it said we don’t want people involved who’re parts of campaigns or things like that. You know, campaigning against hospital closures or whatever it is, which is almost tantamount to saying, ‘We don’t want people who are involved in issues around health care’. 

And it’s not about picking people that it’s going to be easy for us to get on with. I think it’s really interesting that [involvement group] have developed their own, they email each other and talk to each other about stuff. So one of our members referred to it as becoming a community of practice, in which we share what we do and our experiences and so on. And because it’s not the project-specific group, which exists for twelve months and then disappears, it’s gone on and developed and evolved, in a way built up expertise and knowledge, which gets passed on in a way that’s not possible if your PPI is purely project-specific. 

Andy argues that unless you are clear what you expect from PPI, you won’t do it well or be able to identify impacts, so it will appear to have failed.

So I should make it clear that I was a member of a research team that was, got a grant from the MRC to do precisely, to look at this particular question. And we developed this Public Impact Assessment Framework or PIAF so I kind of, I’m going to take, draw on that. But I think in a nutshell if the thing, the key thing as with any research is what is your question and you’ve got to clearly define research questions. Because if the question isn’t very defined then you’re not likely to be able to find any evidence to answer your question. It’s a bit like the answer to the meaning of life and everything is 42. Well what does that mean? Was the question really clear in the first place? So I think one of the problems with it is if you’re not really clear about what your PPI is meant to do then how are you going to know whether I did it or not? 

So I think one of the things that you need to do is to sit down as a team and say what do we want our PPI to achieve? Is it to improve recruitment to trials? Is it to empower people? Is it what…? And it may be more than one and that’s fine. Then you have to think if that’s our aim what is the mechanism that we’re going to build into the project to deliver that out, to deliver that. And clearly if you’re saying that you one of your outcomes of PPI is that people will be, patients and members of the public can be involved and feel that they’re on an equal footing with the researchers and contributing and so on and then your Patient and Public Involvement mechanism is an annual once a year or once every six months meeting where you invite patients and members of the public to comment on what you are doing, that mechanism isn’t going to deliver that outcome. 

So once you’ve decided that you’ve got to make sure that your mechanism is at least reasonably likely to deliver this thing and then once you’ve done that you’ve got to clear out, come on a clear mechanism then you can say well what evidence would I need to collect, not to prove it necessarily because I think it’s very difficult to prove some of these but at least evidence that would, you know, give us some idea to support or refute whether we were able to achieve this or not. and then that again depends, so whether you use quantitative or qualitative research depends on exactly what you want to do, so if you want to use, if you want to know if it improved recruitment to your trial then you’re probably going to use some quantitative methods, if it’s about did people feel really involved and able to participate on an equal footing with researchers then you’re probably going to do some observational stuff and some interviews and qualitative research so then you build in your methods to, to suit that, the evidence and the evidence that should be driven by the question, your question tells you what kind of evidence that you need to need to collect. 

And I think one of the problems with it is a kind of a self-fulfilling prophecy with Patient and Public Involvement is that you don’t put much money into it you aren’t clear about what you want to achieve, you don’t put sufficient mechanisms in and then the impact is very small and then when you can’t see much impact you feel that the next time that you do your research you again as a result of that experience you’re not going to put much resources into it, you’re not going to spend a lot of time planning it, you’re not going to be clear and it becomes a vicious cycle. So actually what we’ve got is badly thought out and badly planned PPI that’s not delivering much impact and the fact that it doesn’t deliver much impact reinforces the fact that we don’t spend much time on resources and so on. And I think that’s one of the things we need to break out of.

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.

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.

Illness experiences stay with you for a long time. A bit of training is not going to suddenly wipe that out. People with training and experience can challenge more effectively.

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.

It’s important to be open about times when involvement does not go well and to learn from mistakes. Just doing it is the best way to learn.

So I think for researchers I think it became some, it depends it can work really, really well but I think there can, it can be the case that sometimes it just doesn’t work very well. I've been in projects were it’s really felt like there’s a lot of tension between what the academics are saying in the project and what the patients and members of the public are saying and people are getting angry or frustrated with each other. And it can feel like you’re putting a lot of time and effort into managing this process and maybe at the end of it it’s quite hard to see where the benefits have come from that and I think obviously it's one of the things, one of the dangers is that we only report what went well and not what didn’t go so well. And that’s hard for anybody to do saying we did this and it wasn't, it didn’t work very well and people got fed up and so on but it’s probably you learn more from those experiences than you do from those that went well or at least as much from those ones so, it’s really important to talk about those. But there are clearly times when that happens, that’s very difficult for everybody…

I do kind of think it’s really important to people start, when they start off with Patient Public Involvement to actually start getting and doing some Patient and Public Involvement quickly because that’s how, in a way that’s how you learn. And if I go back to giving an example of the prioritisation process so it wasn’t trial and error in the sense that we were very keen that, we were very sure that we have commitments and making sure that they would be at least some research projects that came from patients and members of the public and we were also very keen that they should have an input into judging not just the patient initiated projects, but all the research projects whether it be from academics or whatever. The first time we did it, it was all done to a very short deadline, so the papers only came out like the day before the meeting and some people didn’t pick up the e-mail or whatever so they got, they got them on the day the papers that went with the questions so there’s a team heading did some background research on the questions to, to help them make decisions but it was written in not the most user friendly language had a lot of jargon and stuff in it. never the less, I mean people did come back and I think that’s because they could see, I mean we were very open and saying we are doing this for the first time and so we said, you know, we are making mistakes and we know we are making mistakes, but you could go on forever postponing doing it and in a way we thought this is where we are and we can get on with it. And I think what was really valuable was that we were very open about that so we weren’t trying to pretend anything other than that we were trying something out and there were mistakes. but I think people felt very, why people came back was two, people felt they’d been involved right from the very beginning so it wasn’t that something had been set up and run for years and then they were brought in, they were in there from the beginning and because they were making decisions about which research projects we would take forward I think there was a real sense that people very genuinely being involved in the decision making process that mattered. And then when we came to do it a year later when everyone, well six months later you know documents came sort of at least a week in advance and I think we originally had a glossary of jargon to go with it and then we actually had a subsequent version decider, actually don’t have glossary just don’t use jargon in the first place so we did that. then there was the innovation of, of saying not everybody has to read everything why don’t people volunteer to lead on a couple a of, of each one so everybody shared the burden around in that kind of voluntary basis and maybe helped to give people the confidence to do that. Another interesting thing was that the whole of the Patient Public Involvement group would look at the, what was the shortlist of questions, they get more detailed look at and would make decisions about which ones to vote for and then they sent a couple of delegates to the group that makes that decision and they were sent originally with quite a strict mandate, these are the things we want you to vote for.

It’s vital to be sensitive to people’s worries about involvement and show by example it can help, rather than just telling people they’ve got to do it.

I think one of the things that you do, so when you, if you actually do it in practice and show people that it can, it can be of benefit that’s the key thing, there’s nothing beats actually seeing it happen and seeing it work and seeing the contribution it can make and we can all tell stories about what Patient and Public Involvement is meant to do but I think there’s nothing like actually delivering it in practice. And I think also being sensitive to people’s concerns and worries about it, like I said before you know I can understand why people are slightly nervous about this first stake holder event, first big public event for [CLAHRC] in many ways I, I understand that’s, that’s a problem and it’s got to be done well. So I think that’s an important thing. I think also one of the things that I said earlier that some people might not think that Patient Public Involvement is relevant to their research and I’ve never seen it to be my role to just go around and saying ‘well you should be doing Patient and Public Involvement, don’t give me any excuses.’ I think if there’s a group and I’m not sure if this is relevant to us and that’s probably, let’s see when a project comes up that we can kind of demonstrate its relevance and in some ways I think the emphasis has been always to kind of do that. So one of the, I have to say most people in [CLAHRC] have been really, you know, open to that, it’s not like it’s been difficult so we’ve probably got a very, we have got a place because of that leadership and history that it’s more contusive.

It’s often argued all researchers should be able to manage involvement. But over time Andy has come to think it needs a skilled facilitator who can span boundaries.

Actually there's a debate, this is a thing because I’ve had discussions with people who just, we were, people said Patient and Public Involvement should be straight forward and easy and its common sense and everybody should be able to do it. One I totally agree with that and there has been some criticism that in a way what’s emerged is a PPI profession, of which I am one. So we’ve now got this whole, if you want to be critical of it, this new layer of, layer of bureaucracy called, you know, the PPI industry and a whole layer of PPI people that’s emerged. 

And you could say that there’s an attempt to make it more complicated I mean, in some ways than perhaps it needs to be, it should be easy, it should be common sense it should be that everybody’s able to do it and what the PPI folk should be doing should be teaching people that they don’t need PPI people to do it. so this may just represent my own self-interest and justify my existence, but the more I’ve come to do it the more I‘ve come to the conclusion that it actually isn’t that easy [laugh] or straight forward I’ve seen enough examples of it going wrong to think that maybe that’s right and there’s no good reason to think why an academic should be any good at doing it. 

So I think actually there’s really interesting research projects about what makes someone that good facilitator, translator what is it about those people what have they got that allows them to do that. I think it would be really interesting, I’m sure there’s stuff in disciplines like, you know, what makes a good teacher that we might learn from, but this is not about teaching obviously. 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.

If possible, Andy prefers to reimburse expenses in cash on the day, but it took some negotiation with the university’s finance team. ‘Thank you’ payments are a different system.

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.

Andy originally planned that people would have a fixed term of involvement but that felt too brutal. The PPI group has naturally refreshed itself as new members join and others drop out.

We originally had a rule that said, I think it was people could be a member for two years with a possible extension to three years and actually what happened was two things. One was it didn’t prove to be necessary but also it felt quite brutal because some people had put a lot of time into the group and been on various training and things that we’d offered and stuff and built up a lot of expertise and then said well after two years no matter what you’re, it felt very, very brutal actually. 

So we actually had a discussion within the group about that and decided not to follow that strictly and we have had people naturally moving on and we’ve had people moving in. I also think different people bring new perspectives and new ideas so it can be very easy to get into very doing similar things so I’m very pleased for instance that we’ve got a male carer in the group at the moment, we haven’t had a male, we have female carers in the group we haven’t had a male carers in the group before. And we’ve got a range of people with physical disabilities illnesses that have occurred later in life like strokes, mental health problems and that’s quite an interesting dynamic different people with different conditions and then some people that are carers as well. So I think part of the success of the group is to keep new experiences coming into the group and refreshing ideas and so on.

Even in a generally positive culture, there will be varying levels of awareness of and commitment to involvement.

I have to say if we were to answer more realistically there are, I don’t know, a hundred odd research projects that are in some way or other associated with [CLAHRC], the levels and amounts of Patient Public Involvement in all those projects will be uneven and some, some will be doing it really well and some will be doing it less well. Some people will be doing it less well because they can’t necessarily see the relevance to their research so we know some people in the past have said what’s the point of doing PPI in a systematic review we had a discussion about that and actually we’re doing a workshop on that, the INVOLVE conference coming up in November about Patient Public Involvement and systematic results. So people genuinely, I don’t think it’s relevant, some people just I’m so busy really I haven’t got lots of time and resources to do this, some people may be a bit hostile and think it’s just, you know, I work with patients all the time I know what they think I don’t need a Patient Public Involvement Group. I think the majority of people are probably somewhere in the middle not really knowing why. So I think we have, actually I do think we have got a very positive culture and I do, as I said I do think people routinely come to the PPI team to ask for involvement in a way that perhaps doesn’t happen elsewhere but I don’t want to make out that it’s wonderful.