Alice

Age at interview: 26

Brief Outline:

Alice’s job primarily involves research about children’s health. She began involving patients and members of the public in her research approximately two years ago.

Background:

Alice is an Associate Research Fellow. Ethnic background: White British.

More about me...

Alice previously worked with a research group that had a large involvement panel. The role of the panel was to help the research team plan and decide the focus of their studies. Planning research was a joint effort between the panel and the researchers. The extent to which they were involved varied from project to project and sometimes there was less opportunity for involvement and for the panel to influence the research. A specific staff member was largely responsible for communication, but when Alice involved a smaller group of the panel members in her work, she took on the responsibility of communicating with them because they knew her as the researcher leading the project. 

There are research activities that Alice thought weren’t appropriate for people to be involved in, including sophisticated statistics that even she as a researcher wouldn't be able to comment on, but for which you need to rely on an expert statistician. So when some of the members wanted to get involved in more specific aspects of her study, Alice was initially sceptical because the tasks were tricky and detailed requiring experience and training. However, she and her colleagues compromised and were able to involve people from the panel in a particular aspect of the work, giving them help and support to do so. They found this worked really well and the panel’s involvement in this task was extremely helpful for Alice. 

The skills Alice said researchers need to involve people, include being personable and welcoming, flexible and open to what they may add to research. Initially it might feel worrying to relinquish some control and allow people to influence your research, but Alice also felt reassured by the knowledge that if she had any concerns or queries, she could get the opinions of the people whose lives it would affect. Researchers may be worried that they have to do everything suggested by people who they've involved, but Alice said this wasn't the case. If something unfeasible was suggested she would openly and honestly explain why it wasn't possible.  

There are benefits to involvement for researchers and for the people who get involved. Alice said it was one of the more fun and interesting parts of her job and described how people who had been involved said it had helped them regain a sense of self-worth. There are also challenges and frustrations associated with involvement, and one of the most challenging aspects for Alice was managing the expectations people have about what research can achieve and ensuring they don't have their hopes dashed.

Despite arguments for and against measuring or assessing the difference it makes, Alice said researchers should involve people. She has seen it working in her own research and is satisfied by that knowledge. She thinks it improves research, makes it more effective, ensures there's less waste (time, effort, money) and there are better outcomes as a result. In her former job, Alice’s colleagues were mostly positive about involvement, but in her new job no one seems to consider doing it. The programme of work she's doing is already underway so it seems like there is no scope to involve people, but she is trying to think of ways of doing this.

Alice feels involving people can help give you confidence about your research design. It’s also enjoyable and interesting.

OK so for me I suppose most of the benefit. Well I mentioned briefly a benefit of, you know, if I'm really; if there was something that I'm not sure, I didn’t really know what outcomes to focus on. Having a group of people where you know that they have experience and know what they're talking about. To be able to ask them “what do you think?” And that kind of thing. I think they really added a lot to the research, not every aspect of every project we had going on but where they could add it, they did. It was also, you know, really fun and really nice to be able to actually talk to people and, you know, chat with people and the meetings sometimes were difficult which I'll come on to in the costs. But, mostly it was a much more interesting part of the job rather than just sitting at your desk all the time, on your own and, you know, particularly in terms of having ideas for workshops and conferences – they were fantastic – some great ideas came from that parent group particularly for workshops actually where I would just probably do a presentation, you know. Even though I think that’s where my mind automatically goes, if you’re doing it we'll get PowerPoint out, you know. But they had a different perception or a, you know, a different viewpoint from what we could do. 

Giving people feedback about the impact they have had is important. Sometimes it is obvious, but sometimes people are left unsure if they have made a difference.

I think in some cases it was fairly clear to people what their impact was. For example, when, with a particular systematic review, we had an umbrella kind of idea of what a research question was, but it was too vague – we needed to focus down on a few key points. So before the meeting where we were going to make this decision, I wrote down several examples of things that I thought were reasonable to focus on and, as always, had another option if someone had another idea. And in that meeting we discussed them and picked five from the suggestions. They weren’t all as I'd written them down – some of them were tweaked to what people thought would be better and in that case, although I didn’t say, "Can you see how, you know, can you see what effect this is having?" I think that was kind of instant feedback that they said what they thought; we said, "OK that’s what we'll do," and that was the feedback, that was the extent of it. 

But a couple of times, two times that I can remember in the last two years, both occasion with different parents, they said to me, "You know, sometimes I wonder if we actually have any impact on what you do at all or if, you know, we're actually, if all this is even, you know, you even listen to us." And actually both times I could genuinely say, "Well I can only tell you about my experience and the projects I work on. But you do, and we do listen to what you say and take on-board your opinions and try to, you know, what you say is valuable to the research, it's not just something we do, you know, to pass time." But sometimes I think, you know, if one or two people have that concern other people will be having that concern, so I think we could have done feedback better definitely.

Alice’s instinct is always to want to measure but feels ‘you can’t really do a parallel project with no PPI’. She is unsure we should even try.

From what I understand there are two sides to the argument of whether or not we should be measuring impact of PPI. One person, well not one person, but one side is yes we should its research, don’t be stupid, of course we'll be measuring it. And the other side is, well we should be doing it ethically and, you know, it makes sense why it's better – does it matter if we can measure it; can it even be measured? So I can kind of see both sides of the argument – I don’t feel strongly on either point other than I agree that we should be doing it. Having seen real life examples in my work I can see where we should be doing it but I don’t think we should be forcing it down into everything, every aspect of every bit of health research because I think some things aren’t suited to it necessarily - I may be wrong. I think that it's just a very hard thing to measure the impact of not only because you can't really do a parallel project with no PPI and see how many conferences you get invited to you know. 

…Well I do know of some ways that people have tried to measure impacts in PPI which I think are good. But I think if somebody had developed a really super-duper, really great way of measuring PPI we'd be using it already.

But maybe they're just getting known, I don’t know, but you know some ways of measuring PPI that are good but limited. If we can't, should we even be trying to measure it? Well you see I find it really hard to say no we shouldn’t try and measure it because my instinct is to measure, measure. But I think we need to think back to the reasons why we're doing it which is to try and make more effective research that’s more applicable for better health outcomes and if asking people what they think is going to be achieving that and we know the theory of how it should be working. I say the theory but I don’t mean, you know, we know how it should work – maybe that in itself is enough to know that you're doing that. I suppose there's no – even if you did try to measure it, measure the impact, there's still no way of knowing whether or not what people are saying is genuine, so you could say, you know, “did people have a real impact on this project?” “Oh yes of course they do, they decided this, this and this.” 

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.

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. 

Alice recommends training in how to involve people, for whom the research may be a very emotional issue.

And do you think researchers need training?

In PPI? 

Mm

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

In Alice’s last job there was lots of support for involvement but less so in her new department. It’s hard if someone in a senior positon opposes it.

In the last place that you worked what was the general feeling about PPI amongst your colleagues – were they positive to it or maybe negative about it or a bit of both?

I think within my research Unit everyone was pretty positive because I think you had to be otherwise you wouldn’t be doing that job. I think we did have a couple of people who I think questioned whether it was really effective or whether it was really worth doing. But on the whole people, everybody without fail, acknowledged that it was the right thing to do whether or not it was being effective. And I think a lot of people, kind of in the same building but not in the Unit, also thought that it was an extremely useful set-up to have the group. So yeah, on the whole positive but not, this isn’t really from a representative sample because we all worked with in PPI.

…And what's the attitude amongst your colleagues here?

Nobody seems to really even consider PPI here. I think the reasons are mostly what I've discussed before in that there's kind of less scope for it because we're already on track with what we're doing – we know what we need to find out and how – it's just doing it. I don’t know if there was, I've kind of come to things in the middle so I don’t know how much, if at all, there was any PPI in setting up the entire thing at the beginning. But I feel like surely there must have been because now it's such a big part in applications and things. But it's much less an integral part here than it was in my old job.

I suppose the only other thing is that I think don’t under estimate how tricky it can be when a more senior person has more negative, not negative necessarily, but has more set views on what PPI can and can't do. I'm thinking specifically about the example with the website screening that if someone in a more senior position isn’t willing to open, you know, open their mind and be receptive to genuine change, you know, isn’t willing to accept differences to what they want to do, then there's kind of no point in you trying really because I think everyone needs to be working to the same goal for it be effective. And if the person who has the ultimate say isn’t receptive to it then, you know, you can bite and you can try but it's only going to lead to odd compromises or ineffectiveness. That’s it really.

Giving up control feels worrying at first, but Alice has found it generally a good thing. She knows some colleagues find it harder, however well-meaning they are.

I think it's tricky because at the back of your mind is always the thought if they could suggest something utterly ridiculous that is totally implausible and could never happen; what if they say, "I want every person in the study to be given Google glasses," so that, you know – or something like really that couldn’t happen. 

…So at first I think it feels a bit worrying because of what might happen or what could happen. But I suppose it also, at times, felt, I'm not sure if reassuring is the right word, but it was nice to know that if you weren’t sure about something, or what the best way to go with something was, or what you should focus on, you could get the opinions of someone else who had that lived experience who could tell you. So if I was doing a systematic review about something and I could, you know, the research question wasn’t, it was still being focused, it was in the early stages, that I could go to people who had a vested interest in it and say, "These are the options that we have, or you could choose something else, what do you think about these things?" So positive and negative, it was worrying but also a good thing.

…I think I didn’t personally didn’t have so much of a problem with the giving up control thing because, I don’t know, maybe it's just how I am; I'm not sure why. But I know other people I worked with who found it a lot harder to come to terms with not being the big ‘I am’, the one who knows what to do and giving up the control is very hard for some people and actually genuinely giving up the control as well, not saying these are the options but doesn’t this one look good – you know, not leading people but probably to a certain extent I did that kind of thing too. 

I think that’s a really hard thing to do, to actually genuinely be giving people the control, not just hoping they agree with what you think and then going ahead and doing it anyway. And even the most well-meaning person I think can find themselves erring on that side at times. 

Alice worries that funders may overlook projects which are valuable but do not lend themselves to PPI. It shouldn’t be forced into everything.

What I mean is there might be other research projects that are equally worthy of funding that don’t have the scope for PPI. Things where there just isn’t so much capacity to get involved – for instance using really large routinely collected data if you're pretty certain and that you know what you need to do. There may not be so much scope for PPI. So in my current job I use data from the CPRD database – it's routinely collected data from GP surgeries to look at cancer outcomes from symptoms in primary care. So you know since I've been here I have been trying to think actually of how I can involve people in this because of my previous job. But really it's very stats based; it's fairly inaccessible. We already know what we need to do to find out what we need to find out and we already know what we need to find out. So I mean I'm happy to be corrected when we've finished the interview if you can think of a way I can involve people in this but... So from that point of view, from a funder's point of view, my project for example, doesn’t really have any PPI. But if the funders are placing a very big emphasis on that they may overlook other projects that don’t have such a PPI influence but may not be important. 

…Having seen real life examples in my work I can see where we should be doing it but I don’t think we should be forcing it down into everything, every aspect of every bit of health research because I think some things aren’t suited to it necessarily - I may be wrong.

It’s important to try to widen opportunities for involvement, but in the end you can’t make people get involved; it has to be their choice.

Well to a certain extent you can't choose who comes to you and you are, you are offering an opportunity and people will or will not volunteer so you can try to reach the hard to reach people; you can tell people about it. But really I think possibly a certain type of person wants to get involved in this kind of thing and you can't make people come to you. If it was, if you were collecting data from them you'd have to be a lot more concerned about whether or not you had a representative sample. But I think in a PPI sense you can only offer people the opportunity and it's up to them to get involved. The most of the people who are involved in the PPI I did were white, British, middle class – pretty much ninety nine per cent of people were. And it was really unrepresentative but we are in Devon so most people, that’s the demographic here anyway, it's very, very different to other parts of the country. 

And I really take your point that how can a group of sometimes fewer than ten people make a decision based on for something like that and kind of speak for everybody else. But I don’t know, I kind of feel like because it's not, you know, it's not evidence, you're not collecting data. Not - it doesn’t matter, but you just have to bear it in mind and acknowledge it as a limitation you can't overcome. You know if it was a study you'd, try other things, you know you might keep recruiting until you met the, you know, till you had the numbers that you needed to say it was representative but because that isn’t the case I think there's not a lot you can do about it other than acknowledge it as a limitation of what you are doing.

PPI is still a ‘sub-culture’. To survive it needs to demonstrate impact and be seen as part of research excellence. Alice hopes it is here to stay but the future is uncertain.

I feel like there's a very specific PPI kind of sub-culture or like PPI kind of field whereas it should be in all the fields. It should be something that everybody just, where appropriate, has going on but that doesn’t really seem to be the case. It seems very - like there are certain groups or certain established PPI community and people could be doing very similar work to you but not be in that and be really surprised at how you do your work when actually it's still child health and they're surprised that you have so much influence from ‘lay people’.

…What do you think the future is for PPI?

I think that getting the impact thing figured out is going to be kind of a decider because lots of things like to be decided on what the impact is or what the outcome is. People like things that they can measure so they can quantify what they're going to – it all comes down to resources I sometimes think and splitting up those resources fairly, and having something that you can't measure makes that difficult for economists really. So I think that’s going to continue to be a tricky thing. I think it's going to become more important – you know, like with REF it's become a much bigger percentage than it was previously. No sorry it's not PPI, its REF that’s become bigger – that PPI is tied in with that, I think all of that is going to become bigger. I would like to think that more kind of user groups will be set up using core funding because I think that’s quite a handy way of doing it because in many cases you have a grant application which you will hope will get you some money to do something and you need to, if you want to involve people in the most meaningful way, I think you need to do it as early as possible. 

But to do that you need the money and to get the money you need to have the grant, so it's very hard to find – there isn’t, there doesn’t seem to be a kind of established fund or, you know, I know of small funds here and there like the University has I think all the catalyst fund which is awards a small amount of money to people to pursue their PPI activities. But I'd like to think there would be a kind of bigger, maybe national thing where people could apply for a really small amount of money when they're just getting things going so that it could be most meaningful. But again, I don’t think that would happen unless you could prove that it was effective because otherwise you could just be wasting money on something that isn’t having an impact. So I think the future is uncertain [laughs] but it's not going to go away, it's only going to get better yeah. I think it’s going stay now it's here. I don’t think there’ll be a time when people go, "I don’t think we need to bother with that PPI anymore." I hope not anyway.

Alice wants people to know their input really makes a difference to research. Working alongside patients reminds her that the point of doing research is to help people.

I suppose I would like to tell them that their input is really appreciated – I can't speak for all researchers – only for myself, but the people I've worked with I really appreciate that they come from [place names], all over the place, to help me with my work, you know, for their own reasons, they all have different reasons. I don’t know I'd want them to know that it's appreciated; that it actually is making a difference in my work and what I chose to do. And I'm just grateful really that they, that they even get involved, it's really, that they make, they're the most fun part of the job, you know, it's most, the best part is, was always having meetings with people where they could come in and, they kind of – this might sound a bit patronising for a message – but, you know, they have the human element, it made me realise what the point is of actually doing all the research anyway. You know, why we're even doing this, we've got to try and help these people, not these people but everyone in this community. I think that’s about it.

Alice would rather colleagues who are not open to listening to people didn’t bother with involvement.

I would say make sure that you are actually open to changing what you think will be happening and don’t bother if you're not. So if you don’t mess people around and, you know, make them think that they're having a say on stuff and actually you know what you're going to do already – you either have to not bother or change your, or open your mind, and it is really hard to do I'm sure but. Well I suppose it depends if you're the kind of person who could live with yourself if you wasted people's time or resources. And briefly to people who didn’t do PPI I would also try and think outside the box. So you may think, like in my work for example, I don’t think there's really much scope for PPI but I'm still thinking about it, there may be and we have an excellent public engagement person at this University who I've talked to a few times and said, "Oh we're doing this but I'm not really sure how I can involve people in this," and she's just full of ideas. "Why don’t you do this; you could do this with them; you could this activity." So don’t think PowerPoint you know, think, just be imaginative in how you could do PPI.