Anne

Age at interview: 32

Brief Outline: Anne has been involving patients for several years in a range of projects. She is currently working on a large scale study in which a panel of patients and the public is involved.

Background: Anne has been involving patients for several years in a range of projects. She is currently working on a large scale study in which a panel of patients and the public is involved.

More about me...

Anne has involved people in health research on several quantitative and qualitative projects. She is involving a patient group in her current research, which is a large scale study being run across numerous sites. The patient group is made up of people who applied for the role and were interviewed before being appointed. They didn’t have to have any particular condition, but are users of the NHS.  

When her current project began, there was no involvement strategy put in place, so Anne and her colleagues constantly have to think of ways of involving the patient group. This can be frustrating and has resulted in them discussing ways of involving members that she thinks are inappropriate. 

Anne thinks involvement is useful when researching a specific topic or illness that researchers don’t have experience of, but she questioned why it’s necessary to involve patients in research that is more generic, asking ‘why is their random health experience more important than mine or yours?’ She believes patients and members of the public have an important role to play in research, but that they should be involved on researchers’ terms – their role should be ‘to steer the ship’ and to be ‘a critical friend’. In her experience, that doesn’t always seem to happen and sometimes she feels like the patient group is telling the researchers what to do.

Like other researchers, Anne has spent a lot of time studying and training to build up research skills. As a researcher you develop, what she described as ‘tacit skills’, which allow you to decide if participants are capable of taking part in research. Such skills are incredibly important, especially for interviewing participants, and they are learned and developed over time. She is wary of asking patients who aren’t trained and haven’t built up these skills to conduct research interviews and qualitative data analysis. However, she thinks that patients should be involved as co-applicants on funding bids, but that their involvement should always be meaningful and never tokenistic. 

Anne is concerned that there isn’t enough known about the potential harm that involving patients and members of the public can do and would like to see more research done on this. She described involvement as ‘fashionable’ and as ‘a shining beacon we must aspire to’ that is seen as ‘a hundred per cent positive’. But she thinks there are problems with involvement that need to be acknowledged. She would advise researchers to involve people who have direct experience of the conditions they’re researching. 

Anne feels frustrated that involvement is so ‘trendy’ and you can’t criticise it. To be a good researcher takes years of training.

It's a nightmare. It's a complete nightmare because I've got to be really careful as to what I say and do. And as well like PPI's really trendy at the minute and I'm not saying it hasn’t got a place, but it's not considered very PC if you fundamental – you know like, it's like, "Oh brave new world." Patients should be like co-applicants on bids – actually I do agree with that in some respects, but patients should be co-applicants on bids; patients should be researchers – why don’t we just [effing] bring a load of patients to come and sit round my desk? Why did I bother doing a PhD? Do you know what I mean? So it's like really difficult because these people are quite capable people, but they’ve not had the training, they’ve not worked as a researcher. You know everyone knows that to be a researcher you’ve got to cut your teeth, you’ve got to do at least three degrees: you’ve got to do an under-graduate, masters and PhD. You’ve got to, you know, you cut your teeth in your first research assistantship where you're closely monitored and evaluated. And then at the opposite end of the spectrum they just want to bring in these people who've got nothing to do with anything and let them loose on our study – ill patients at the bedside. It's really difficult for me so I've got to kind of be really careful how I manage it.

PPI is held up as this thing, as a shining beacon we must aspire to. It is essentially seen as a hundred percent positive; there is nothing bad about it. You know, that’s what it's seen as. And it's like why are we not critiquing the bad things about it? That’s, and I think your research might hopefully draw out some of these things that shows that it's not always this amazing thing and why are we not critiquing it more, essentially.

It doesn’t matter what the person’s skills or background are so much as what they have to say.

I don’t know if it's about a set of skills because, as I say, in my ideal scenario it's just people with the disease or the condition so that could be anyone. You know, like I remember when I was doing [a previous study with patient reps who had experience of the condition] study, I went and interviewed a bloke who'd - he was forty-odd, he lived with his mother in this council house on this horrible estate, and like he'd never worked, but he was so insightful and he had so many interesting and articulate things to say. And he could equally be a patient rep. And I think it just depends on the person's personality and characteristics whether they want to come and contribute or whether they want - you know, it's not really about set skills, I don’t think.

A public member on a steering group caused problems for Anne because the person did not understand qualitative research.

Then we had a lay rep and this woman was just supposed to be just a member of the public, to advise on things. And the problem I had with that is that she was – and she was quite nice – she was quite high up in whatever she did, professional woman, but she did not understand qualitative research at all. So half way through the study I decided that I was going to change my sample… So I took it to my PI and my PI was like, “Yeah, great” and she said, “But can you just mention it at the steering meeting? Because I think it's a change in direction and we need to inform everyone.” 

And the lay rep could not get her head round the fact that you could do this… She just kept coming back to it. "How on earth half way through a study can you change the people that you are talking to? How on earth is this possible?" She just could not get, and it went on for like twenty minutes to half an hour me defending qualitative research essentially. "How on earth can this be possible?" And it just, that for me was one big example of how these people who think – we always think they benefit studies but they can equally derail and detract from studies, because then like my PI at the time was a consultant in a hospice, she wasn’t a researcher. She's been involved in a lot of research but she's not a researcher, she's definitely not a qualitative researcher, and she just trusted me. And so that derailed it. Because this woman kept on and on and on, my PI after the event was like, "Can you just talk me through why it's alright to do this?" whereas before she'd just implicitly trusted me. And so that is an example for me of someone critically misunderstanding the research process because they're not a researcher and they don’t have any experience of it. They're being asked to advise on something that they know nothing about and coming in with their opinion is completely wrong. And then it's actually making my PI question me. I was just furious afterwards, I was furious.

The training patients and public need depends on the task and what’s expected of them. It can be embarrassing if they are asked to do something they have not been trained for.

Do you think that there should be training, proper training for patient and public involvement reps?

Depends what they're doing. So if they are going to go out and do the research – yes; if they are going to be used in an advisory capacity, maybe not, because I don’t know what you'd train them on. Like, you know, reviewing documents and stating your opinion in a meeting, you can't really train someone on that, it's quite difficult to orchestrate, so it depends on the task I suppose. It really depends on what you want them to do and what their function is as a PPI person.

It's context specific so it's each research team depending on what you're doing with them and what you want them to do. But like the collaborators’ patient rep who reckons that he's gone out and done some research, it's really embarrassing because he thinks he's done some research but he's not - And then it turned out what had been done is, he'd been given an interview transcript and asked to make comments on it which is all nice and fair enough and you know we might do that with our – if we were doing an in-depth interview study and it wasn’t in a trial we might do that, you know, why not? But it's just they don’t understand what they're doing and that’s a bit strange really, I think. And when we got to the bottom of it we were like, "Well how did you analyse it? What did you use to analyse it?" And he was like, "Oh well I just made some comments in the margins and..." We didn’t say anything because we didn’t want to embarrass him in front of everyone, but that’s not analysing an interview transcript, that’s just making some comments. So it really depends on what they're doing with them as to the level of training and guidance they need I think.

We should not go back to the ‘dark days’ of never talking to patients, but there has to be a balance of control between researchers and patients. Tick box involvement is worse than none at all.

I think the thing is now everyone knows that to get a grant you’ve got to involve patients and I think that’s a good thing essentially, because we don’t want it to be like, you know, the old dark days where you're doing a study, but you never even talk or see a patient. I mean it can't be like that anymore. We've got to move forward, but I feel like the tables are tipping now in terms of like patients as co-apps on bids and patients running the shop. And it's like these people are not qualified or trained to do it. I just, it's such a bizarre thing. You know GP surgeries are now asking for patient groups?    And it's like, I don’t know, imagine if you got behind the GP's desk and said, "Well I'm a patient, I can be a GP now." It's like, it's tipping and it's just really bizarre to me. And I think as well it's, in a negative sense, some people because they know to get a grant they’ve got to involve patients, they kind of go and involve patients in a really tick box token way and that’s worse than not involving patients, really, I think.

Involvement can be valuable but payment should be ‘a thank-you, not an inducement’. Anne thinks paying people who do not contribute much is questionable use of tax-payers’ money.

I think twenty-five pounds an hour to come to a meeting and sit there is not value for money and it's not value for the tax payers. I don’t really know what I would pay people, but I think that’s like – you know they say there's a difference, an incentive is supposed to be a thank you not an inducement – and I think like twenty-five pounds an hour for some of our patient group might be considered an inducement, because I think that’s quite a lot of money really. I mean I don’t earn twenty five pounds an hour, you know; and I know like they are working and they’ve got to take time out of the day, but I think it's quite a lot of money. And as well the Chairs of the patient group, they get paid more because they get prep time, but I'm not quite sure what they're prepping. They get twenty five pound an hour to prep things outside of the meeting.

And one of the things that I've heard before about PPI is that PPI helps to use public funding in a better way. What do you think about that?

I think if you're getting someone guiding your research, someone steering it in the right direction, perhaps the direction that you’ve not thought of - because for instance, as I keep saying, you don’t have [specific health experiences] and, you know, to guide you in that way and to correct you when you're on the wrong path, I think that is a really good use of money. But I mean in my past projects they weren’t paid, I don’t think they were ever paid to come to anything. I'm trying to remember. They were never paid.

I think it's got to be pitched right. I think twenty-five pounds an hour's quite a lot. And I think, I'm not saying you know we've got to make them work for it, we've got to be whipping them, but they do need to be contributing more than just turning up and sitting there with their arms crossed and just not saying anything, because when they're not saying anything they're not adding anything.

Involving people with particular experiences has been useful, but Anne questions what insight members of the public bring compared to any other member of the research team.

I think they can be really useful when it's a very specific topic or disease. So like say, right, I was researching [people’s experiences], but I’ve never had those experiences. So you know it's really useful to have someone to advise me on that and someone especially who was in that position, as this woman was, but has now come through the recovery process and can advise us on what it's like to be doing that. Equally, I've never had [name of condition] and I don’t know what it's like. So those patient reps were really, really useful in that project. But at the minute the project I'm working on, because it's such a generic area of medicine - they could be you, could be me, and the discussion that we have in a research team quite often is that I've got experience of health care, you’ve got experience of health care – why, these people who were just randomly advertised for and interviewed and brought in, why is their random health experience any more important than mine or yours or my colleagues’? 

You know, we're all users of the NHS so it's a tricky one really. I think when it's disease or topic specific that’s really useful. When I don’t have specific experience of that, but when it's just generic experience of the NHS, well I've got that, everyone's got that, so it doesn’t really make sense to me in some respects.

Anne feels PPI has gathered a lot of momentum but may end up falling out of fashion again.

What do you see for the future of PPI?

I'm not sure where it's going to go to be honest because I think it's going more towards, like I said, I think it's tipping in a way that I don’t think people anticipated it would have tipped. And it's - I don’t know. Why hire research teams? Go out and grab a load of patients out of a hospital ward, get them to come and do a research. You know I don’t, in the future, I don’t know how it's going to go.

Do you think it might burn itself out?

Yeah potentially. Because like things grow in fashion, don’t they? Like impact is a good thing now, isn’t it? Everything's about impact. Impact within five years of research being published, like demonstrable impact. And like, you know, even ten years ago that wasn’t a big thing. So like fashions wax and wane, so I think it might recede maybe in the future. I don’t know. I'm not sure but I think it is just, I think it's become like a lorry that they can't stop and it's just gaining ever more speed, and no-one seems to be able to put the brakes on it.