Suzanne

Age at interview: 40

Brief Outline: Suzanne manages a programme of research. She has involved both young people and adults in her research over the last six years.

Background: Suzanne is a project manager and works in health research. Ethnic background: White British.

More about me...

Suzanne works in social science and health services research. Her research largely looks at patients’ thoughts about and experiences of illness, and the healthcare they receive. She has recently begun working on setting up an involvement forum for young people with arthritis, and started out by working with young people to find out what involvement means to them. The forum is likely to have an input into deciding what gets researched and designing studies, and perhaps involving some of the young people as co-researchers. 

In addition to this project, Suzanne is also working on a European project about medicines development in which patients are involved. 

Suzanne believes involvement is about decision making and should be more than just consulting patients. She acknowledged that there may be some areas of perhaps laboratory-based research in which it would be harder to involve people, but believes they should be involved in all other types of research. She said researchers can forget how institutionalised they become and that working with patients gives broader insights that you wouldn’t get otherwise. There is guidance about how to involve people, but Suzanne said would really like to see examples of researchers’ experiences of it, including the problems they’ve had. 

Thinking about demonstrating the impact of involvement, Suzanne said it should be done using a range of methods and that qualitative methods, like observing what happens at meetings between researchers and patients or members of the public, might be useful.  

Suzanne’s feelings about involvement have changed in recent years. Initially she didn’t feel confident about doing it, but doing some research about it with the young people with rheumatoid arthritis has helped her think differently. She would encourage other researchers to involve people because ‘it may reap some benefits’.

Suzanne reflects on the differences between qualitative research with patients and patient involvement in research.

One of the things that you mentioned a couple of times was about qualitative research and PPI and involvement.

Yes, yeah, yeah

And kind of the blurred lines or whatever. 

Yeah

Can you talk a little bit about that?

Yeah it's an interesting one because we're thinking about this quite a lot lately because a lot of the work I've done has been asking people's views on things. And you know their experience of things and how, you know, and looking at how that might improve their healthcare. And a lot of work hasn’t been like that as well so it's kind of -But I think the difference is the time to change to something. So, you know I've done, you know quite a lot of work in the past, you know, sort of looking at, I don’t know, evaluating services and things like that and - But actually I'm not convinced of whether anything's happened on the basis of it you know, so it's kind of that commitment to act which I don’t think is always there. So that was one kind of parallel. So, you know it is kind of asking, you know being open and asking people what they think but also, you know you can't always promise that something's going to happen on the basis of it but it's kind of. And you can't always do that with involvement as well but it's sort of giving, I don’t know, it's the kind of whether you consider involvement being asking for views or whether involvement is involvement in decision making. It ties into all of that again doesn’t it – what do you mean by it? You know and obviously, you know qualitative research you know the onus is on the person who you're talking to and you're trying to understand how they're interpreting the world and all of that. 

And you are trying to do that I guess with, you know, with PPI as well. But I don’t think somebody goes away and thinks about what it all means and, you know, you know tries to, you know make some recommendations on the basis of it with PPI, so it's kind of. There's probably only room for skills for the qualitative skill set within PPI for that reason, but it's thinking about, you know, how the mind-set I guess is different as well because you're sort of; you’re very much perhaps focused on a goal if you're involving somebody so you're, you know, you're trying to, I don’t know read about a guideline or something like that whereas, you know, you’ve been much more exploratory in finding, you know broadly trying to find out what people think about something because not a lot's known about something so. Yeah there's lots of. It's an interesting one isn’t it but it's lots of blurred lines and, you know, I've had people say, "Oh you do that for years, you’ve done that for years," and you think, 'Actually I don’t,' or you know, sometimes we review the PPI element of Research for Patient Benefit grants here before like a peer review before it goes out. And you know it's interesting the amount of qualitative proposals who kind of don’t incorporate any PPI because they think they’ve done it already so, it's quite, that’s quite interesting.

Suzanne’s thinking on involvement has moved from doing it to satisfy an ethics committee to seeing it as a way to change the balance of power.

So can you tell me a little bit about how you came initially to involve people?

I think it's an interesting one isn’t it because I think its come much more on the agenda in maybe the last maybe ten years or so. And I think, I think it's been, it's been that kind of like, that sort of question on, you know, an ethics form and I'm sure we've all written these terrible responses to it saying, you know, "Oh yes and I talked to two people and whatever." But I think that kind of started me thinking about it. I think I was always kind of interested in, you know, the sort of, I guess a power balance really that I was often going to talk to people on really sensitive issues – you know about their health, about it affects them personally and everything else. And actually I sometimes, I personally was kind of questioning is this right sometimes and, you know just working within the system as it was. But I think that kind of attracted me I guess to kind of moving into this area because I was, I don’t know, slightly getting more uncomfortable that I was kind of going in and sort of talking to people about really, sometimes really sensitive issues. And obviously they're giving willingly but actually could they have more of a say in what I was asking and that sort of thing. So I think that’s kind of why I did.

Suzanne says you ‘forget how institutionalised you get’. Involvement is about more than just improving information leaflets. It can change your approach completely.

I think it depends on what's being researched. I think some things, kind of really early phase laboratory stuff, I think it's harder, would be harder to argue it in terms of funding and, you know other resources as well, personal resource. But I think, you know, anything kind of you know, sort of anything else really I think is kind of fair game to be honest. I think it really does, I think it gives insights that you just wouldn’t and you know, you forget how – I mean I've talked to a lot of people in my career but you kind of, you forget how kind of institutionalised you get as well. And actually you know, you, how you know, you occasionally lose your own real person-ness if you know what I mean? So I think it does add that and it does add the kind of – so it’s a different take on things but also an opportunity to make you think differently as well. So people say, "Oh there's a new insight," but actually it's what you do with that new insight as well, and I think if you're able to do something on the basis of that, then I think, I think that’s, you know, that’s great. And we sort of you know do it on a minor level when, you know, sort of with all the, you know testing questionnaires on people and, you know, information leaflets and stuff because you do perceive things differently but, you know it's taking it one step further for me to, you know think about actually how you approach the study overall as well. You know so there's that – that’s a definite benefit. 

We need to think of alternatives to traditional committee structures to enable more people to get involved. Suzanne suggests social media can help.

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

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

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.

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. 

Researchers who have already done PPI can pass on good practical tips, and getting researchers, patients and public in the same room to discuss misunderstandings can help.

And I think I'm probably in a better position because I've spoken; I've had the chance to speak to a lot of people who have involved people so the next kind of projects that I do I think I'll be more likely to feel comfortable with doing it. But prior to doing this I was probably in the ‘argh!’ camp. So the support I guess really it's hearing about other researcher's experiences. It's having some kind of, you know, I say guidance but, you know you need a few flowcharts with things you know. How do you deal with the payments issue, how do you deal with, you know? You know there was a discussion with one of the involvement groups, so the lead, the lead academic for that was sort of saying how, you know, how you manage when something goes wrong and that person needs to be managed out of the group. You know so there's kind of, you know, it's like any sort of interaction that’s going to; things are going to go right, things are going to go wrong and it's you know the kind of, the real nitty gritty of it I think is still quite nebulous really. 

So I think that’s getting that right is, would be really helpful to researchers as well and I think, you know, it's sort of. I'm not sure, I don’t even know if that’s a training course or what – I'm not entirely convinced by that but, you almost need to get, you know, researchers and you know, patients and the public in the same room and get; have a few kind of, you know, home truths maybe, I don’t know. But because, you know, you sort of. Because I think you know on both sides sometimes there's a lack of understanding, there's a lack of understanding of, you know, the sort of things that, you know, we have to do. We can't, that just can't get away from ethics committees. You can't, you know, as much as you might like to sometimes. Or you know you, you know, we've got to have a consent form, we've got, you know all these kind of things which, you know, for a member of the public sometimes they're like, 'What,' you know. So it's sort of a broader understanding of, you know, the research process but from, you know, from our point of view it's actually appreciating that, you know, why should that person fit into our system? You know are there ways that we can involve them that are, you know, less kind of restrictive and that sort of thing or can we get their views about things, or give them a voice you know in other ways? And I think some people do like citizens juries down the way and stuff like that. So yeah I think there's just, I think there's a lot of stuff out there but it's actually bringing it together and I'm not sure that people have done that yet really and I think that’s possibly part of the difficultly.

Whether patients need training depends on the type of involvement. Suzanne sometimes thinks people don’t need training to bring their personal experience to the discussion.

And I think, and again that’s the other grey area as well I think, is around, you know, do you have to be skilled up; do you have to be knowledgeable to be involved or, you know, just being who you are, is that not enough? And I think, I think the jury is still out on that one to be honest because it's sort of – I've worked with a number of different camps on that you know, where, you know something like this medicines development sort of think they have to be really skilled up on everything. You know they’ve got to know the ins and outs of clinical trials and ethics and everything else. And then, you know actually this person has, and we're talking to somebody who'd ; I think her child had an awful accident – like she'd been, she'd been burnt and she was taking part. She was OK now, but she'd been taking part, it was work around pressure dressings I think. And she was sort of, you know, and I thought actually, you know, 'you’ve got enough knowledge there you know, you don’t need skilling up on this, you know. You know what's, you know, happened to your daughter; you know what she needed to manage it, you know that’s more than enough.' So it sort of, you know, I guess that’s sort of the another grey area as well. There's lots of them unfortunately.

Involvement may seem time-consuming and challenging, and some researchers are unsure of the benefit. Suzanne feels some academic disciplines have a more receptive culture than others.

But it is kind of thinking about if you're going to do it, then you’ve got to try and do it effectively within the resources that you have. So it's kind of, you know, do you settle for doing something if you know you can't do it right? And I think a lot of researchers probably struggle with that because, you know, it attracts perfectionists sometimes.

So I think it's kind of, you know. Sometimes people don’t want to settle for something because they know they're not going to be able to do it – give it its due service really but yeah.

Are there also things that conflict with your time or, you know sort of things that you, that by involving people other things in your job will be detrimentally affected or you won't be able to do?

Yeah I think it does take time doesn’t it and I think it's sort of. I guess you sort of taking a punt on the fact that it will speed things up eventually. I don’t know if – short-term loss long-term gain and that it will make, you know, speed things up eventually but also hopefully produce a better, you know, better project, I don’t know yeah. I think, you know, but everything, there's so many things that will take your time up that you didn’t expect they would and you know it's, it's another one to add into the mix as far as I see it but it's sort of an easy one perhaps for people to say, "Oh that’s going to take so much time," and that sort of thing yeah.

And in general do you think people – researchers – are sceptical about this or do you think that they are trying to embrace it and?

I think it depends who you talk to and I think within some fields it's a lot easier to sell it to people. I think sort of, you know, there, here, in this university. You know there's quite a large kind of, you know, psychology departments; nursing, primary care where it's within a culture a lot more, whereas I think it's been interesting, you know whereas I think within other kind of specialities, you know say with hospital based specialities, there might be some more of an issue. 

…And you were saying that it involves a relationship change I think 

Yeah I think so because it's more that, you know, you are. I don’t want to talk about power because it's not that but it's more that you're. I guess you know you're not setting the agenda or you're trying to jointly set it and I think that’s, you know, it's challenging sometimes you know and I think you, you know, you can fight, you know; you know some people probably. I'll probably include me in this might find that a bit threatening sometimes and I think it's, again that down to your own confidence – lack of confidence and lack of experience probably of doing it. So I think it's, yeah it's either that’s where the shift is really, it's between, you know, I think this is important to, you know, to find out that actually now you're telling me. 

Practical things to consider include being clear what is expected of people, making sure they get feedback on their role, and encouraging a wider group of people to get involved.

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

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

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

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

Expecting people to have committee skills and fit in with professional structures limits who will get involved.

And what about involving hard to reach groups?

Yeah that’s – what are hard to reach groups was the first question that springs to mind. And I think, the yeah, it's sort of, and how you know. I think that again there is this issue around, you know, those who are involved are kind of white, middle class, previously worked in, you know, managerial positions and stuff like that and, I think they’re... I think that’s wrong. I think and you often see that sometimes on adverts for things that you know – must have experience of committee work – and you sit there and think, 'But why?' And I think, I find that quite annoying but then it's sort of thinking. Again that probably taps back onto the; I think I made the point earlier that actually you're trying to involve people in existing systems and existing, you know, very kind of – professional's the wrong word - but you know kind of professional structures and, you know, rather than actually talking to them about how they should be involved, so maybe it's clipping on it a little bit and actually trying to adapt the mechanisms by which you will involve people. And I think that probably puts a lot of people off you know. 

NIHR and INVOLVE have played a major role in supporting PPI, but it features more in some funding streams than others. Suzanne argues that we need a more joined up approach.

It's very much something that you know INVOLVE I think have, you know, have made huge kind of leaps forward within the community as well. 

But I do think there's still quite a lot of work to be done and I think it's sort of, again it's this issue of there being pockets of, you know, I don’t want to say go back, so pockets of activity, but not, nothing kind of joined up at the moment and I think that’s a real issue and I think it's trying to join up that activity. Maybe that’s something, you know, they could do a bit more of but also, you know, you know there's obviously stuff, you know NIHR obviously, you know, very behind all of this – I think that’s a real positive but I'm sure there's probably more that they could do as well. And actually making it more of a priority I guess because there's only certain funding streams where it seems to be more highlighted than others, like Research for Patient Benefit and I think the other one, used to be SDO [Service Delivery and Organisation], it's something else now, Health Services Delivery [Health Services and Delivery Research] and something, anyway. But the, where it's an issue where some of the others like HTA [Health Technology Assessment] and, you know, because I can see a huge, there's a huge area around patient involvement in clinical trials and I'm not entirely sure that’s been focused on as much as it could have been you know. 

Researchers may feel upset listening to people’s stories, and scared that how they respond may come across either as too warm and patronising or too hard and distant.

Are there emotional consequences for researchers?

No that’s a good question. Again there's this feeling threatened – I suppose that’s an emotion. But also perhaps not knowing how to manage someone else as well, or someone else's emotions. We talked, I can't remember who I was talking to this about but you know, I think you get quite a lot of experience of doing that with qualitative research because, you know, you see a lot of emotion. But I think, you know, for some people that’s quite, you know, alien and they're actually, you know, within their sort of, their sort of professional head on and, you know, they wouldn’t necessarily be able to cope with that. But I think, yes I suppose for researchers kind of, you know, and also the, 'Oh god am I doing the right thing? Am I, you know if I'm going to do this I should do it well; am I involving the right people?' So there's slight worry I guess. And then, you know, and actually, you know it's like any, when you do any research you might not realise how you're going to be affected by someone else's experience as well and whether it, you know, chimes something in yourself too. And I've certainly had that happen a few times.

Not with involvement but just with other, you know more qualitative work. So yeah, so I think, I think, I'm trying to think what else really but I think that’s probably it you know, sort of you know, the you know managing your emotions of your, you know, empathising, upset by the person, you know, who's telling the story. You know and also ensuring that, you know, your empathy is not perceived as patronising or, you know, there's all kinds of things like that as well so it's about how you... And also that you're not seen as hard as well so it's kind of a difficult balance to make really. So I think, yeah I think that’s a really tricky one because, you know, you're sort of. And I think that comes, that’s the problem because that comes with experience as well and actually people haven’t had that experience; then they can feel a bit, I don’t know, at sea really and a bit kind of scared by it. Yeah so there you go – scared, threatened [laughs]. All those lovely emotions. You know but also on the flipside, you know, if you can get something to work positive, you know that you feel that actually you're, you know, you're really hearing somebody as well you know. And for some people that’s not going to be a given but that will be for me so yeah, yeah.

Suzanne disagrees that the ‘best’ patient contributor is always one who can be unemotional. Emotion may be precisely what they bring – but it needs to be treated with sensitivity.

And then for patients, I think one of the big things is the emotional impact of it and I think that’s really under-played and it's been interesting in some of the work that we've done – it's kind of been, you know, this idea about what a good patient contributor is and actually ‘unemotional’ is, has come up time and time again. It's like, but actually if you talk to the people who have been involved then they're like; actually this stirred up loads of emotions in me and actually I think, you know, for some people the emotion is the power that they bring to the situation. 

And I think it's sort of helping that. I think that’s a real issue, like helping those who are doing the involving to manage that but also, you know, if the person is upset let them be as well because actually they're there, you know, most of the time because they’ve had that particular experience. But for them if that’s not managed appropriately that can be a real downside. I'm not saying everyone's weeping and wailing, but you know what I mean, it's kind of, you know, realising the potential for that.