Pam

Age at interview: 54

Brief Outline:

Pam conducts social science research. She began involving people in her work approximately seven years ago.

Background:

Pam is a Research Fellow. Ethnic background: White British.

More about me...

Pam started her academic career after working in other jobs, as a travel agent, doing community development work and raising her family. She often provides advice to other academics and clinicians about how to involve people in research and also provides training.  

When asked to define involvement, Pam said it was about doing research ‘with’ people rather than ‘to’ people. She said it has a range of purposes, including making research better and ensuring it isn’t just carried out by experts, but also by ordinary people. She has experienced what it feels like when research is done to you. When she was ill, her consultant treated her using a new treatment and later asked if he could publish her experience as a case study explaining how it had ‘revolutionised’ her life. He couldn’t understand why she asked to be involved in the publication. However, Pam said she has seen other people ‘grow and develop from opportunities to be involved...and it can be very rewarding to see that level of progression.’

As well as conducting research, Pam works with the Research Design Service and is also a member of INVOLVE, the government funded national advisory group that supports involvement. She had to fill in an application form that required a lot of personal information, which came as a surprise to her. Her interview involved working in groups with others, including lay people. She said it was a positive experience and because it was a challenging application process, she said she feels ‘quite proud’ of her membership. She said being a member of INVOLVE is fun and it gives her the opportunity to meet people she wouldn’t otherwise meet. 

Pam said the costs of involvement for researchers include time and emotional labour. She said you need to ‘give of yourself in order to build trusting relationships with other people, especially people that perhaps haven’t been used to having a voice, and that can carry some costs and consequences.’ She explained that researchers may need to develop a thick skin because involvement is another way in which their work can be criticised. But she said there are also benefits to involving patients and members of the public, including the opportunities for research to tackle questions that otherwise may not have been asked. She also said people who get involved benefit by gaining new skills. 

As a qualitative researcher, Pam is somewhat sceptical about measuring the impact of involvement. But she said people want to know what difference their input makes to research, so it is therefore important to try and capture it. She believes there are some types of research in which there is no need to involve people because it would be a waste of their time. But she thinks research is improved by involvement and would encourage researchers who are sceptical about it to think about it.

Pam thinks clinicians need to go beyond the clinic setting to hear from patients. They will learn different things.

So I think PPI is, incorporates being a member say of a funding panel. So you would get members of the public being on specific funding streams like Research for Patient Benefit and they’d sit, and it seems to me that that is a legitimate role as a member of the public and a lay person that doesn’t require experiential knowledge of a particular health condition. And it’s more to do with governance and yeah just, just that person plays a particular role as a non-expert. Whereas I think in other instances it’s really important to get people with first-hand experience. And I think what I’ve found is that sometimes clinicians, for example with the bladder and bowel project, clinicians were only used to interacting with people as patients in the clinic. And so it was a real eye-opener for them to sit in a room and do some PPI with women who were able to talk about the impact on their sex life on going swimming and things that they perhaps might not have revealed in the clinic or that their consultant wouldn’t have considered. So sometimes, you know, it varies according to the purpose of the PPI I think.

Pam is sceptical about impact measures and how to disentangle cause and effect. Where PPI advisers agree with researchers it may look as if they made no difference.

So that on the one hand you’ve got the idea of science, science and rationality and building this evidence base and on the other hand you’ve got a very messy complex world of policy and practice and how some of these decisions get made. 

So I think you won’t stop researchers calling for more research is needed – that’s what we do we want to keep ourselves in a job. Sorry if that sounds very sceptical. But I think, I think that partly relates to how I feel about wearing different hats. We’re all patients and we’re all citizens as well. So I think people will have a variety of modes of knowledge and evidence for different purposes and uses. It can be handy when you’re in a biomedical environment to be able to point people and say this is published evidence and, you know, for some that’s, that’s persuasive yeah so I think it’s interesting.

And what do you think about impact or accessing capture and measuring values and impact?

I think people would probably like to know the impact of their involvement. I think the difficulty of disentangling cause and effect – do you know that its PPI that’s made a difference – is methodologically challenging. And if you go back to a democratic or an emancipatory rational for why you’re doing PPI, then you’re doing it because you should, because people have rights and entitlements to influence over what’s done in their name or with public money and so on. 

So I think because – I’m primarily a qualitative researcher, so I just have some scepticism about impact measures, but I don’t think there’s anything wrong with trying to see the difference that it made. But I don’t think if you were to involve people and they didn’t make a difference that might be because actually they’re in agreement with the researchers and I wouldn’t see that as wasteful or ineffective or inefficient.

Chairing and facilitation are key to good involvement. Pam recommends a training course in chairing, and bringing in others with good facilitation skills.

I’m not sure about skills, but I suppose oh people skills springs to mind. And that sounds so simplistic and, but yeah I think when I talked about the bladder and bowel example I found myself in a room with two consultants and women who’d had direct experience. And one of the consultants just didn’t have the people skills. And so I did an exercise where we introduced ourselves and said what we’d had for our breakfast. And we just needed an ice breaker and he didn’t have those skills because they weren’t part of his job. So, and I know I’m very impressed with, some people have very advanced facilitation skills and are able to draw out the person who doesn’t speak enough and shut up the person who dominates the room too much and so on. So I think there are some pretty high level skills there yeah…

What I really liked there is a guide by Toucan Associates about how to Chair a PPI meeting and, and that’s quite, I mean it’s quite a bold statement I think about how to deal with that situation. So yes it can take some, some skill. And I think that’s where sometimes it can be useful to have, to not expect a biomedical researcher to have all that as part of their, their skill set and then in that case to maybe bring in a nurse or somebody with PPI responsibilities to do some of that facilitation work as well.

Pam has not always felt confident dealing with senior academics. Some are more open to involvement than others, but they share an ‘ethical impulse to improve people’s lives’.

I had one very interesting piece of work with the RDS – it was in my last job this was – whereby a clinical psychologist came along with ideas for studying memory loss and didn’t know what to do about PPI. And I had a meeting with her and sat down and kind of signposted her to a lot of INVOLVE resources. And what was really great about that was she was very receptive. And so I discovered that she’d actually got longstanding involvement with a voluntary organisation for Alzheimer’s, I think it was. And so it involved me kind of pointing out to her that she was already involving people. She was already using it having conversations with people about her research. So I kind of helped her to sort of reframe and boost her confidence in a way. But that, that was a bit strange for me because I haven’t always felt confident in dealing with very experienced academics. But I have come to learn that not, you know, none of us know everything, and so I have built and developed confidence in my knowledge of PPI. And I’ve come to understand that actually people do come seeking quite prescriptive guidance and help and assistance, and I enjoy that especially where people are open to learning. People are not always so open, so sometimes people are quite – I had an experience – somebody was quite hostile to the idea pf paying people, couldn’t understand the need for a PPI budget in that way yeah. And I do think there’s still possibly some entrenched attitudes about ‘the experts know best’ and what could lay people possibly have to offer…

So I think what involvement means to me is, varies according to context. Because now for the context that I’m in working with a lot of biomedical researchers, they’re possibly not motivated by emancipatory goals necessarily, but they’re not likely to be unethical people. And so that’s where, as I say, translating across disciplinary boundaries has been quite interesting for me and yeah. So I’ve worked through the RDS service on some quite sensitive topics. So there was one about surgery for women’s bladder and bowel problems and so you can see really that, you know, where clinicians are willing to involve people in that sort of research that they are motivated by, as I see it, ethical impulses or trying to improve people’s lives. And so I’ve had satisfaction from helping that come about.

Pam says it’s the researchers and institutions who are hard to reach, not the people. Practical things such as a crèche and a flexible approach to paying expenses can help.

I think you can, I don’t imagine many people describing themselves as hard to reach. I think quite often researchers are hard to reach, clinicians are hard to reach, and institutions are hard to reach. And certainly when I was working in programmes with say Sure Start parents it was very much about ways and means and it entailed things like providing a crèche that meant that people weren’t hard to reach then. And similarly with expenses, you know, there are lots of practical things that can be put in place that enable people to get involved, it does require effort so yeah.

Pam describes how the Research Design Service has developed pre-grant funding support, helped reduce bureaucracy in payment systems and provided advice on benefits.

So yeah, in the Research Design Service we’ve developed these payment mechanisms so that people can actually get some financial support to do the PPI before they get their research funded and - And I think what I’ve quite enjoyed there is tackling the bureaucracy because it kind of feels like if you can get through the payment mechanisms, you’re sort of putting your money where your mouth is, you know what I mean? It’s evidence of some commitment and organisational support. And it does, it can really take some doing and that probably sounds a bit geeky, but I’ve quite enjoyed that problem-solving element really to feel that that’s a way of demonstrating your principles and if something is important then you can find a way to make it happen.

And what sort of obstacles did you face with trying to implement that plan?

Well not, not many because I haven’t necessarily had direct personal responsibility for, for implementing these plans. But we’ve had a lot of support to overcome obstacles from people like administrative staff. Their roles can be quite vital. They’re behind the scenes, but if they’re the people that ensure that people get their payments on time, then they’re actually vital to demonstrating respect really. And then there have been, yeah there are some obstacles about the way in which universities might expect to set people up on a, an employment contract in order to process the money through the payroll systems so that, that can feel like an obstacle and it can be an obstacle for members of the public that don't understand or might even be frightened by some of those very bureaucratic formal procedures.

I suppose especially if there’s implications for benefits or issues around benefits too.

Yes.

Have you encountered that?

Yes, yeah. In fact because I’m a member of INVOLVE I’m actually working with them at the moment on that topic so I was on a telephone conference yesterday and revising the payments. And there again, as I say, some people have got specialist knowledge and so there are people that are updating the advice on welfare benefits and so it, it can be complex and challenging. And I think yeah that, that there are obstacles. But I think from my experience working at a sort of organisation on an institutional level means that you can put some systems in place and I suppose that’s where if you are encountering perhaps novice researchers or people that have not done it before you’ve got to do a certain amount of hand-holding to explain how, how these mechanisms work really.

How far you need to worry about whether people are ‘representative’ depends on what you’re trying to do – sometimes it’s really important.

So the practicalities of putting that into practice are pretty challenging, but it will very much vary according to what it is that you’re trying to do. So if you’re the James Lind Alliance and wanting to involve stakeholders in a priority setting process then you would probably think about representatives from different interested parties. But if you’ve got a very fast deadline and you want some members of the public to take a look at your lay summary to see if it’s okay then you’re probably not going to go to the extent of worrying about if people are representative. So it kind of varies according to context which sounds like a cop out really. But I think it’s important to consider there’s this idea of the usual suspects and whether that’s tokenistic. And I think actually thinking about it that’s why, although when I did the evaluation study it appeared that we got very simplistic research questions about who gets involved, there was a theoretical underpinning that informed that very simple question. So we were able to show that who got involved, they were representative, if you like, of people that lived within a ten mile radius that were available for ten day time meetings and so on. So yeah so again these, you know, the, the ways of putting these complex theories into practice are pretty challenging and not to be dismissed lightly, but not to be ignored either I feel.