Alison

Age at interview: 47

Brief Outline: Alison conducts health services research. She has been involving patients and members of the public in her research for approximately eight years.

Background: Alison works as a senior research officer. Ethnic background: White British.

More about me...

Alison found it hard to say when exactly she began involving people in her research because she started doing around 20 years ago when it wasn’t formally labelled as involvement. In her current department, a colleague founded a group of public members who are interested in being involved in research. Alison thought this was helpful because she doesn’t have to go out and find people. But she said a downside to having an established group might be that she could end up working with the same people all the time, which may ‘close you off a bit to other possibilities...so you have to be a bit careful’. 

Alison thought that in some ways involvement should be treated like a job because people are paid a daily rate to be involved. She suggested that how people are recruited and selected needed to be given more thought, but recognised that a formal selection process might not improve the power imbalance between researchers and members of the public. 

Thinking about the purpose of involvement, Alison said that getting people to check aspects of the research process (e.g. reviewing information sheets) was important and that interacting with them was a reminder for researchers not to think about people as ‘a set of symptoms’. But she thought it would be inappropriate for people to be given free rein in deciding what should be researched. Alison recognised that involvement was important for getting funding and said that one of the risks of enforcing it as an important part of research was that others might approach it as a ‘tick-box’ exercise. 

In previous projects, Alison involved people in analysing qualitative data, but found that this wasn’t particularly successful. She felt uncomfortable about it and said that without being trained in this type of analysis it’s difficult to do a good job. To involve people to analyse data effectively would require proper training and support, but finding the time and resources to do this would be tricky. 

There are challenges with involving people that Alison said needed to be considered including what to do when people focus only on their own experiences. She said that good communication skills and empathy were important to successfully involving people. Alison said the benefits of involvement outweigh the costs, but it’s important for researchers who are involving people to have a clear idea of why they’re doing it.

Involvement is about more than either democratisation or specific tasks. It is about reminding researchers that people are not just ‘a set of symptoms’.

Yeah I mean there is the argument as you mentioned earlier about democratisation and people should have a say in what goes on but I'm not entirely sold on that one because, yeah if you give people completely free reign to set the research agenda, I dread to think what we’d get out. Another one I guess is about acting as a kind of check, you know as a support for us as researchers by acting as a sort of check or an editing process in what we're doing and saying. So that could be that process specific stuff like, you know, looking at an information leaflet and so on. I mean that’s, those are the examples where it's always really easy to show the value of user involvement. But I think more generally to, at potentially it's a bit of a reality check when you're discussing issues and people go, "Yeah you're going to come up on this but really the bigger problem is that," which obviously if your study is designed to look at this and that works better then maybe - And I guess to sort of counteract any tendency to think of people in a study as a set of symptoms or, you know, not a fully rounded human being with a whole bunch of other stuff going on in their lives, it’s a reminder about that. 

For Alison, the boundary between involvement and qualitative research is blurred. Some formal involvement structures can feel too much like a tick-box exercise.

And so can you tell me a little bit about your experience and involvement. So sort of when you first started involving people and how that came about?

I think for qualitative researcher this is quite a difficult question to answer because, going back to when I did my PhD which is quite a long time ago now – it's in the nineties, because a large part of it was qualitative I was working with people. Even though it wasn’t formally labelled as service user involvement or participation, the very nature of the research actually involved people. And because the topic was to do with disability and in part about what is the nature of disability as a social construct – you know it's quite political. So there's lots of stuff in there and lots of stuff that was influencing me about sort of disability rights and the whole agenda of ‘nothing about us without us’, which I notice has now been taken up by David Cameron, but I mean that’s, originally it was a disability right so I think, and of course it's highly relevant. It's the kind of work that DIPEx does, the user involvement stuff. So no because it was a PhD it wasn’t, it was a very sort of personal thing for me, but during the course of doing that I, as well as sort of talking to people and gathering personal stories and, you know, doing lots of going round spending time with people, I then did kind of feedback to the, or had little meetings with the people whose stories I'd been using and writing up and sort of said, "Well this is how I've interpreted what you said and what do you think of this and does this resonate with you?" 

So that was, it was part of the research process, integral part of the research process rather than being a separate phase of user involvement. But actually that’s what it was. And this is something that I've been aware of ever since that there is this kind of interesting blurring particularly when you're doing the qualitative work between formal user involvement structures and what is the research process. So that was a long, long time ago. And then I went away and did loads of other types of work and have been back doing university or academic style research for about eight years. 

And during that time there has been an increasing emphasis on formally involving service users. And you know the requirements coming out of funders and so on – you have to show that you're doing it. But I have sometimes have anxieties that it's more of a tick box than anything else. 

Patient involvement can make you think differently even if the impact is not huge. But Alison sometimes feels under pressure to be more positive about it than she feels. She says ‘about sixty percent I want to do it.’

The benefits – I guess that’s sort of, that broad reality check thing; so nice interesting people and a lot of the benefit comes not so much from the formal discussion about a particular piece of work they're involved in but a more general chat, insight into their life stuff which is maybe outside the direct scope of what we're looking at anyway – puts ideas into your head and you think, 'Mm.' 

And occasionally there have been cases where someone's picked up on something, you go, "Ooh yeah good point I forgot to take account of that in this thing I've just written or..." So yeah there are certainly some examples of those things but not that many to be honest. But also I guess it gives you a sense of confidence that, if you’ve, in terms of interpretation of material and also, you know, writing up an information sheet or a plain English abstract or something, it is your people there to check it with and you think, 'OK they may not have changed many words, they may just have said it's fine…' but that’s a useful thing, that’s an endorsement. 

Yeah so yeah I think don’t abandon it, that’s for sure for all my reservations.

And how much is it something that you want to do?

Mm about sixty percent I want to do it. The bits of me that don’t want to do it are the kind of, 'Oh god I've got to be polite to people when I’m not in the mood to be’ [laughs] – all that kind of stuff.  And this sense of oh I've got to, there’s a word for it.  When you're sort of smiling and endorsing one way of doing something and inside you're thinking, 'I know this is a waste of time,' or pretending something is true which isn’t, I feel really isn’t true and that’s, I'm giving you very mixed up response here aren’t I? But that, no on balance I think, 'Well kind of, it's a nice thing to do and it might make a bit of a difference but I don’t think it makes that much difference.' But the public message we have to sort of endorse and support is, 'it's terribly valuable and important and makes a massive difference.' So I think that to sort of disjunction between what I think inside and the kind of the public story, I feel uncomfortable with. So that’s one reason for, yeah the reason for my forty percent – oooh don’t make me do it.

It’s useful having a regular PPI group but it’s ‘the same people again and again’. Alison wonders if they need more formal selection to widen the group – but that also has drawbacks.

Who are this group of people, who are they made up of; what are their experiences?

Really, really mixed. I mean what's – this is to do with funding and how the group set up their – the common factor is meant to be about experience of long term conditions rather than emergency care, but we've actually drawn them for the emergency care studies. So they're people who have had some experience of one or more long term conditions, either themselves or caring for a family member. So they, yeah I'm just trying to think how, what routes they would have come to us by, because I wasn’t directly involved in recruiting them but, as far as I know, through linking with other user involvement organisations. In Wales we have Involving People which is equivalent to the English INVOLVE, so it's the same structure there.  I think word of mouth through, you know Stroke Association and existing third sector structures. And then there seems to have been a sort of, a bit of a snowballing effect, so one guy came along and then his brother started being involved as well so that kind of thing. So they are from all over Wales, mostly fifty-plus, you know mostly retired.  Some with a professional background working in health and social care so they have a, you know, dual perspective there.  In terms of sort of, yeah how much education they’ve had and so on, really, really varied. Yeah a real mixed bag and some more – I'm not sure angry is the word – but some, yeah some of them were quite sort of more inclined to get worked up about things.

So passionate, bang on the table.

Yeah, yeah

And how do you feel about, firstly having access to a group like that when it comes to having to involve people?

For a researcher it's great because it's like you don’t really have to sweat over it, you just get on like. Just put the word out and, "Oh there's Mr so and so, we've worked with him before; we know he's really nice" [laughs]. But the downside of that is that you can end up working with the same people again and again which maybe sort of closes you off a bit to other possibilities. 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.  

Alison says she still has to constantly remind herself about involvement. It’s high on funders’ agenda but she is not always sure it’s as valuable as everyone says.

And is there something that – does this compete with other things that you could be doing with your time or compete with other things that maybe benefit your career more?

Yes, but I don’t really think of it in those terms. Because you, it's become essential now so you can't really think of it as getting in the way of doing other stuff because it has got to be integral yeah.

And is it easy for it be integral?

Not really no, no. It's still a, I still have to sort of constantly remind myself, 'Oh yeah I need to do that; I need to think about that.' And yet for all the reasons we're talking about before about the mechanics of identifying people and having appropriate structure and all the rest of it, there's a lot of thought needs to go into that and that sort of flexibility and responsiveness and all the rest of it yeah. And I think sometimes we sort of try to take what appears to be the easy routes so, you know, sometimes you're seeing examples where people sort of say, "Oh yeah we're doing user involvement." Actually it's not user involvement it's involvement of a professional who works with users, you know someone speaking on their behalf which is quite a different thing. Or it's a one way communication. You know you tell them what's going on but actually there's no scope for anything to come back. So all those things take effort to make sure you're not caught into those traps.

…And so all the PPI that you have done so far, is it something you feel confident about embedding in your research and thinking about those sort of soft skills and the people skills?

Yeah I guess so. I feel fairly confident in being able to carry on doing the kind of things we've done up to now. But not necessarily confident that we're doing the most effective or productive thing that we could be doing I guess. And I think some of that questioning is not, it's simply because there is no ideal model, there is no perfect answer and actually the whole thing is a compromise and fundamentally limited. And that I think at the moment because there's such, it's so high on the agenda, funders and all sorts of people I think there is a touch of Emperor's new clothes going on, that this is so valuable, important and useful, [inaudible]. Well that’s one good thing to do but it's not, in reality is not actually that valuable, important and useful – that is quite heavy as well. But I think it's definitely a sort of tacit consensus that it's all absolutely great and people don’t really question it now.

Alison feels researchers have to remain in control of the research methods. It would be hard to find time and resources to train people to a good enough level to do analysis, for example.

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

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

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

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

OK

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

It’s important to be clear about the limits to involvement and to be realistic about what people can expect, so neither they nor researchers waste their time.

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.

Sometimes the quality of involvement in practice does not match what it looks like on paper, and patient contributions may be ignored or irrelevant.

I guess two things which are difficult there around kind of the quality of what goes on and really working out what there is going on, sort of value. And this sort of comes out in two ways and one is that you can have, you can tick the box by saying, "Yes we have Mr X and Mrs Y coming along to our meetings and blah, blah, blah, and they're paid for it and the rest of it." But if you have a situation where you're sitting round the table and Mr X says something completely off the wall and everyone goes, "Oh thank you so much; now to get back to what we were talking about." And that’s not, you know, depending on what Mr X says. Sometimes it is completely off the wall and there's no point in discussing it at any great length because it's so not contributing to discussion; but you tick the box by having to do that. That’s sort of a bit troubling. And the other, I guess, is about sort of relationship between structures you set up and how they're implemented. 

…So on paper it looks like incredibly complex and thorough. And then when we actually pick apart what happened – you know one of the study areas ‘How often did the local implementation team meet with service user involved?’ Ooh not at all – that on paper it was meant to be there but actually other things happened that the local researcher went and talked to, you know, I don’t know and got some views but, on paper you had all this stuff which looked really great, possibly a bit cumbersome but in reality so different. 

So yeah one of the risks I guess is that you have in sort of pushing for user involvement you're, you can generate a kind of tick-box response. Or even, you know, with the best intentions at the beginning of the study, people hoped that this, this and this would happen but actually for whatever reason it didn’t. And that’s partly to do with just practical issues like, you know, when you have one researcher who's got some contacts – that person leaves and a replacement doesn’t have the same contacts and those are little things like that. 

Alison wonders if a more contractual arrangement would be fairer and help ensure value for money but it could also exclude people.

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. 

Alison just doesn’t worry about whether people are ‘representative’ or whether they might become ‘professionalised’. In research about emergency care she feels anyone could get involved.

To be honest I don’t get too hung up on that because I just think they're not there to represent other people and they can't you know. And I think particularly when you're dealing with emergency care, because it's, it's sort of everyone and no-one you know. There's, any of us could be carted off in an ambulance today, you never know but – well actually you do get some people who phone ambulances once a week but it's not like people who have been living with COPD for years and know all about medication – it's a different kind of issue.

So to have any kind of almost randomly selected person is as good as any other randomly person I think. And I think if you start to worry about whether people are legitimately speaking on behalf of others then yeah, you just, you get into a very tangled web there. I guess if you were like doing a study of diabetes or something, I don’t know, something that people were living with and you had a, like lay representative who was also secretary of the local branch of Diabetes UK, and was able to say, "Oh I've asked around the Club and they’ve said this, that and the other," that might be useful.

But on the other hand that person. Yeah there's the other debate there isn’t there which is connected, which is about whether people become insiders because they have too much expertise and all the rest of it. And I think that’s a kind of false dichotomy because people are always a little bit of each you know. And just because someone starts to know more about the technicalities of the healthcare system or about the research process and all the rest of it doesn’t actually mean they're no longer living with that long term condition or having that experience as a person, a body. Yeah so that’s one I just don’t worry about really.