Felix

Age at interview: 36

Brief Outline:

Felix is a research fellow. He has been involving people in research for the last three years.

Background:

Felix is married. Ethnic background: White German.

More about me...

Felix describes his research background as multidisciplinary. He worked in Germany and Switzerland before moving to England. He had involved people in research before, but began to do so on a more formal basis as part of a synthesis of qualitative research on involvement. He said that reading all the research on involvement was a good way to learn about it. The synthesis considered how to demonstrate the impact of involvement and how to plan an impact assessment within research projects. The findings showed that involvement is challenging for both researchers and patients because everyone has different expectations. They also demonstrated that the majority of impacts (both positive and negative) of involvement were on people, which, for him, was somewhat 'eye-opening'. As a result, Felix believes that researchers have a responsibility to consider the risk associated with involving people and that it is unethical to engage in involvement without being fully committed to it.

For the synthesis, a group of patients and members of the public were involved on a consultative basis. Felix bakes cakes for the meetings, which were held at the university, because he wanted the atmosphere to be relaxed and casual. He thought it would be better for meetings to be held in a less formal setting and advised others to consider this when applying for research funding. 

Felix said it was important to create sustainable involvement groups so that research could continue to benefit from knowledgeable and informed service users. He said approaches to involvement need to be serious and flexible. In his current work, the involvement group said they would like to be involved in analysing qualitative data, so he is going to train them how to do that.  Although this may slow down the process, Felix hoped it will make the analysis more meaningful.

Felix has always had a strong ethos about involvement and thinks there's no point in doing research unless it has 'a real world relevance'. He sees himself as an advocate for the public position in research and feels he can empathise with patients' experiences and perspectives. Involving people is an addition to the rest of his job, but he is happy to do it because he’s found that working with the public is gratifying and keeps his research fresh. It also validates his views and perceptions of the world, and of his research. But if he couldn't involve people well he said he would prefer not to do it at all. He feels strongly about researchers being accountable to the public and, in future, would like to see the public becoming more involved in setting the research agenda and formal structures put in place to support involvement.
 
Felix would encourage other researchers to involve patients and members of the public in their work and said that despite the difficulties associated with it, it is worth doing. He hopes senior staff will lead by example, and promote and support good involvement in future generations of researchers.

Felix argues it’s unethical to do involvement badly, without planning what you expect from it for each project.

That also means and I think that if you are having a risk of creating lots of negative impacts both on the members of the public but also on yourself as a researcher or a project team, there is a certain responsibility and a risk to consider. And I would say if you're not fully committed to making that work and a central part of any research, then it's an unethical choice that you're doing. So I'm against, I would advocate against any public involvement that hasn’t got a serious and, you know, a very early, also an early stage of planning, collaborative planning on what the values and the expectations are with regard to this project, and also, you know, identifying the areas of impact which you want to have a, you know, an almost a negotiation. So I would say, you know, any research proposal that hasn’t done this before they’ve put in a grant and it should be categorically stopped, you know, by the commissioners and the funders because it is unethical to do bad public involvement.

Felix suggests that the most important impacts are on people and relationships. Making changes to a specific piece of research is secondary.

Another great insight from the project was probably for me, an eye-opener, was that most of the impacts are on people rather than on the actual research. So I think that’s something that’s probably mis, not misunderstood, but not known about or taken in, you know, taken in account of you know; this public involvement is about the people so that’s all the people that, you know, all the stakeholders within a research team and the people that you enrol to collaborate with. 

So, you know, and that’s the main thing and that’s also where most of the positive and the negative impacts happen. And then the, almost a secondary part is about the actual impact on the actual research and this is based on our review of the literatures. So I think, you know, when, you know, I would tell to anyone who engages in it it's more about, you know, it's going to challenge you as a researcher and it's going to challenge the members of the public because everyone has different values, expectations and impacts that they're interested in. But it's primarily about that interaction and this is where you're creating impacts and not the actual research. So and that’s, you know, so if, if you take that down into numbers, you know, so sixty, impact on research, sixty different impacts on the various phases of the research and it's a hundred and twenty impacts reported on the actual people involved. So that’s twice, you know, it's twice as much, twice, oh you know, more important – not more important but you'll create more impact on the people and on the research. 

Involving people is gratifying and Felix feels it keeps him fresh. But he recognises ‘playing the user card’ gives him leverage within the power dynamics of academic life.

But it's an inherently imbalanced relationship between the members of the public. Unless you say, "OK we've got members of the public, we want to generate research questions with them and then carry the process through from beginning to end." So, you know, I understand both, I really understand both sides of the coin and probably for me being in a position where I don’t have power because I'm a, you know, at the bottom of the chain within that academic pyramid. 

It's probably easier for me to feel solidarity with the members of the public, but I think there's also something about the ethos behind it. I think well it just, you know, I generally take a lot of gratification from working with, you know, working with people that are not the academic tribe because I struggle to identify with what that means to be in this academic tribe. So I think it keeps it, you know, for me it keeps it on a really personal level, really fresh and... And but also, you know, I guess and it once, should I ever be in a position of power, I will feel the strain of, you know, the competing interest that you're dealing with and the timelines and all those barriers that have been identified in all these reviews and literatures. It's then harder to do but I would probably make a decision to do it well or not at all if I was in a position of power. But there's another dynamic with that as well and I, you know, I could, you know, very honest about that it, than that gives me almost leverage and I think there's another behaviour we identify, you know, playing the user card. 

You kind of, you know, within those power dynamics, you know, you can be an advocate for the public involvement side and... So I think I probably have engaged in that kind of behaviour which is again, you know, in a way disempowering to the public involvement because it's not really about the facts or the truths or the, you know, the kind of knowledge you want to produce or in fact the project ends, but it's more about the dynamics of power within research projects. And that’s probably, you know, that’s probably a negative behaviour and that might create negative impacts between people and projects and I happily, you know, I happily admit that I've been culpable of that behaviour so.

Felix has been on a learning curve with involvement. He worries about it being done badly but recognises people learn by doing it. It has to be hard to be a true learning process.

Over the years since you’ve been doing it has it been a trial and error approach or how have you sort of come to do the kind of PPI you do now? 

Yeah, yeah. I mean, yeah and I think it sounds a bit smart because here I am, you know, I didn’t know anything about it three years ago and then, you know, clearly it's a result of a learning curve this where I am today. And it's probably, you know, I want to allow other people to make those. You know, when I'm being so harsh about the unethical stuff, you know, I think I'm talking about the gatekeepers that could potentially have an impact on good PPI and could steer those things in a helpful way. Yeah because you want people to make those, and almost you know, you know I've got, I had quotes from people that say, you know, “good PPI is the PPI that hurts” you know. It has to and I would probably agree to that you know. It has to be a little bit hard sometimes you know, for it to a learning process. So, you know, maybe there is something to be said for people to just go and do it and burn their fingers. But I think it has the risks that they then walk away from it and kind of come up with a compromised version which says I prefer to keep them at a distance so I'm going to delegate it into a PPI group that I can consult at my convenience or not. And then follow on their advice or not and I'll make that decision and all the power's in my hand. 

Yeah so it's, you know, it's clearly a learning curve and hopefully to the, you know, to the better but, but that’s as diverse and as complex as people are diverse and complex and how they approach their lives and lifelong learning really and how much. Probably the more senior you get the less, you know, the more you have an established system and the less or the, or the easier, you know, to reduce complexity, the easier it is to stick to a routine and how you deliver. But like, you know, like I say I think it's a source of continuous freshness and validation, you know. Hopefully people would see it like that, you know, to say, "Well does that make sense, you know, what I'm doing?" and you know to, you know, their understanding that it enhances and it adds value to anything you do if you allow that to happen and that’s mm yeah. So yeah, and maybe I should you know; maybe people must do that and hopefully it'll change them for the better.

Felix sees more senior staff now setting the tone for patient and public involvement as a normal thing to do.

But the more people you have at the; you know, the more champions you have of public involvement the more that’s a really normal example of how you do good research. And I guess, you know, and we've probably seen that process of normalisation and a new generation coming into those senior positions where they lead the example of it and, you know, and all the champions you know that are out there, you know, relentlessly advocating for it and, you know, admirable people. I'm sorry about the incestual community bit there – some people out there that really push this forward in a very meaningful and inspiring way. So yeah, I think there's hope for the future always otherwise there wouldn’t be any purpose for even doing of this really mm.

Felix reflects on academic power, tokenism and control over who is allowed to get involved. But he can understand why researchers want to protect their research.

And on very different levels, you know, on the level of feelings, beliefs and behaviours and like, I guess, that the most well-known one are tokenism, you know, they attempt to involve results and processes dominated by pre-determined decisions. For example, involving small insufficient numbers of people, impacts of PI being minimal or non-existent - that’s tokenism. But also paternalism – this is behaviour recorded by the researchers. Paternalism, you know, treating public as passive recipients of professional intervention and the paternalistic premise that professionals know best. But also something which we called protectionism and tribalism and so not letting the public encroach on your own territory as a researcher and also tribalism preservation of a specialised language and codes which always goes down to barriers and facilitators with regard to language. 

Elitism and the conviction about the own idea/own views or specialist knowledge as having more intrinsic value than the views and anecdotes of the public. For example, you know and that the middle class, you know, selective process, you know, that the people that are more articulate get more attention within the dynamics. Other behaviours are disempowerment - treating power as elephant in the corner seeing, you know, seeing PPI as an optional input and being selective with regards to including public views. And I think I guess that’s something that happens very often. Conflicting demands, I call it. The only, this is the report and it's interesting that a lot of the behaviour is by the academic researchers and I think that’s a sign of clearly you know where the power lies to steer projects and but I also say something in defence of that as well, in a minute. Potential behaviour from members of the public is separatism – you know, exclusively propagating user controlled research, using conflict as a collaborative approach that really people that have really strong convictions through a process of learning probably, you know, from repeated experience of negative impacts I guess.

I like the double binds; I think that’s a really nice finding. So a demand on the public is imposed but the demand is inherently impossible to satisfy. So, for example, when you think about the confusion about what skills or knowledge is expected of the public and why you know; kind of, you know, what's lived experience stand for – what does it mean? What's the, you know, kind of, what's the value of that as opposed to scientific knowledge which is also a normative debate I guess. And this may then be a form of control without open coercion so if an individual is too challenging or confident or active in their beliefs or behaviours, they're being seen as not typical or representative. And this is where the representativeness debate comes in you know, which links to, you know, what kind of knowledge are we actually seeking to produce but also to inform that production.

So I think there's all these interesting dynamics going on about stemming probably also from a lack of knowledge and experience of doing it and, you know, you can't blame researchers and projects for not knowing how best to do it. But you can warn them that it is a very risky endeavour. So and then, you know, in defence of that academia is a highly competitive, you know, process and it is I don’t blame professors that have gone through a lot of hard work and still do, and to come and, you know, a dynamic of academic achievement which is clearly geared towards creating an elite of people with a clear sense of power and achievement. I don’t blame them to then say, "OK open the doors and let your decisions be made by someone who isn’t, hasn’t gone through that process." So it's a real territorial thing. So as long, I guess, as long you are in the territory of the university that’s always going to be an imbalance, so that’s set. But I think it's important to make that transparent and, you know, open and not pretend it to be anything else. 

So if you're saying, "OK I'm going to consult you as a member of the public and I'm going to take the decision of whether I think that’s feasible or not depending on my own personal agenda," then that’s honest and you can, you know, you can hope for some kind of interchange and, but that’s, I think in my opinion, probably not happening enough. But it's kind of bites itself, you know, it's. So you have to uphold a pretence of, you know, real equality and partnership and fairness and all these other values that are floating around in those guidance documents and whatsoever. But it's an inherently imbalanced relationship between the members of the public. Unless you say, "OK we've got members of the public, we want to generate research questions with them and then carry the process through from beginning to end." So, you know, I understand both, I really understand both sides of the coin and probably for me being in a position where I don’t have power because I'm a, you know, at the bottom of the chain within that academic pyramid. 

Informal, face to face relationships are important, and Felix always brings cake to meetings. It is vital to build in enough time, both for researchers and the people involved.

I think it just needs a huge, it needs a big place in the funding proposal and that includes, and that should include regular meetings, preferably face to face and in a really casual setting as well. So I just make cakes; I just bring along cakes, OK well that’s I pay, you know, that’s my own, but that’s the tone I want to set in these meetings so. Yeah, just, you know, give a good wad of money to it but also say what you are wanting to do with it I think in a detailed plan and make that, you know, make that proposal and strategy in collaboration with people. So I think it needs careful planning as resource time in advance to do it. And then yeah just the facilitation of room space and time within the project timelines to have enough time for people to read. You know, it's just an extension of time in every way; more time for communication explaining possibly from calls, face to face and stuff. Which is nice because it, you know, if you do that you allow yourself as a researcher a bit more time to do your job properly I think as well. So I think there could be potential if, you know, if you justify it well there's no excuse for not having time to deliver grants. But then I haven’t been a major principal investigator yet so maybe I will learn to regret those words still.

In one of Felix’s studies, the patients involved chose to accept lower payments so they could meet more often within the same budget.

You sort of were talking about costing it into funding proposals and then in your message you said that people should be offered the opportunity to be reimbursed if they want.

Yeah I think so and also because, and we've done that in, we've done that in projects where, because you could then argue well, you know, if you want to be, because we, I think we said INVOLVE rates, so really generous rates in the proposal. And then we said, actually you know, if we did half of that which is still fair, you know, payment, or could be fair, then we can meet more often face to face and then, you know, the PPI group then made the decision to say, "Well we prefer the face to face meetings and to do more of them, so please, you know, can we have a lesser payment and then, but then meet more often," you know so I think there's. And that’s a nice way to kind of delegate a way of a bit a decision so, you know, cost it really generously, you know, based on INVOLVE rates or, you know, any of the big, big bodies are quite generous about their hourly rates aren’t they, or the daily rates. You know, cost it accordingly because it might, it might actually, you know, look nice in the funding and then, you know, give yourself a bit of leeway then to kind of spread it, spread it as you want I guess yeah.

Felix recognises we all wear many hats, but it can be uncomfortable blurring user/researcher boundaries. Credibility to represent others is complex and contested.

I think there's an issue about identities isn’t it and what kind of hats you wear. You know the principal investigator hat, the service user hat and it's, and I think that’s also an ongoing source of; because, you know, because you are, so you're a service user, what does. You know you're a person that uses services first of all, you know, so that’s one aspect of you as a person. But in this formulaic academic enterprise we kind of put people into slots and give them; and ideally to not make it too complex we want them to wear one hat not plenty of hats so I think it's probably, you know, also informed by my own experience as a service user. But then does that, you know, and then, but that’s always, you know, that’s almost dangerous, you know, to say, also to admit to, you know, as well in a way to not appear to be weak in this really competitive academic environment but - But I also want to entail that to a wider because everyone experiences suffering. You know it's, that’s a universal component so I think it's almost an artificial role expectation that we are creating in these project environments because even the professor or, you know, everyone has experienced some degree of suffering so, you know, that isn’t anything really unique but on the other side that’s a source of the credibility and the knowledge base that we attach to a service user. So it's a really complex mix of things going on there isn’t there of those, you know, competing, conflicting identities. 

And I suppose we then do end up with intellectually reflective people, middle class that mainly do this kind of work and collaborate together which is very much, you know, within the academic paradigm, you know, of what it means to achieve and not to achieve I guess, yeah. I'm not sure if that makes sense but it is very complex about the identities and the mix of them and from what you speak and it goes, you know, it goes into the debate about representativeness doesn’t it? You know, are you then, so you know, are you then allowed to make claims for other people or your peers that also use services? And what's the unique contribution, you know, it's kind of the double bind thing, you know, that means you're a bit, it's a bit too critical what you're saying; it's probably not representative of the wider population because I don’t like what you're saying. 

People can expect involvement to be uncomfortable sometimes, but also rewarding and a way to meet others with similar health experiences.

Do you have any messages for members of the public who do PPI?

Yeah be insistent you know, be uncomfortable. I think, I still like that quote about, you know, it being difficult. But you know if, and but also be open and honest about what you expect and what you want to get; or what your motivation is to come into it, you know. And but it's well worth it you know to, I think it's brilliant if people volunteer or even come in to say, you know, to do a to. I think never the motivation for people is to actually make money out of it. I think it should be reasonably reimbursed possibly, you know, with the decision of the panel because some people don’t want to get paid. But you know yeah, I think if they're open for it it's a great journey to engage, you know, and to do something if you are willing for that to be uncomfortable at times but it's going to be instructive one way or the other so I think it's a great learning. 

But also great personal, you know, you will walk away with a lot of personal, you know, even if it is the normalisation with a group of peers that have gone through similar experiences – I think that’s where something, some of the impacts that we recorded that are really crucial is just to have a peer group as kind of self-help aspect of that impact which is, you know, is super valid. You know, it's that people impact on people thing that I'm talking about. That should be part, you know, of the rationale of the researchers to allow that to happen because at the very least, I think that’s probably one of the common denominators why people go into these groups to share their experiences with other people and the benefit they get from it. So and then insist on that to be happening and informing the research, but insisting that it's about you as a member of the public more than the research and to take that into account and anything rather than, you know, being expected to then just be there to inform the research. It's yeah, but do it yes, it's well worth it [laughs].