David

Age at interview: 49

Brief Outline:

David is the co-director of a surgical trials unit. When he first started doing research he was sceptical about involvement and felt reluctant to speak to patients. However, since he was asked to join the James Lind Alliance he developed a different way of thinking and now sees involvement positively.

Background:

David is the co-director of a surgical trials unit. Ethnic background: White British.

More about me...

David is the co-director of a surgical trials unit. When he first started doing research he developed clinical trials that had some patient involvement. However, he explained that in these early trials he and his colleagues, ‘thought we knew best’ and described the type of involvement work he did as ‘tokenistic’ and ‘patronising’. Initially, he was sceptical about involvement, worrying that ‘patients were ill-equipped to make appropriate decisions’. He also felt that involvement took away from the limited amount of time and resources he had for other work. However, over the years, he has experienced a considerable change in how he involves patients and the public and in how he thinks about it. 

It was a combination of reasons that David said led to him becoming less sceptical about involvement. He believes he wasn’t exposed to involvement the right way to begin with, but he learned to think differently about it after he became involved with the James Lind Alliance (JLA). Being part of the JLA made him realise that academics and clinicians tend to think they know what is important to patients. But ‘that’s often not the case’ he said, because ‘what we think we know, we don’t, and the patients often tell us something entirely different’. He learned that it is important to set correct research questions and get the right framework early on in his research, which requires involvement. Looking back, David wonders why involvement wasn’t always part of the research process and feels that it is ‘very late in the day to start asking people who are involved their opinion on matters’.

David believes he’s had an extraordinary journey in terms of involvement. Although he was reluctant to involve people at first, he now finds involvement a rich resource to tap into because he said, ‘you end up with a better research question and better research’. Although he thinks involvement is here to stay, he described it as ‘a bit of a pendulum’, swinging between patients and clinicians or scientists. He worried that it might swing too far in the patients’ direction and said we need to be careful not to undermine clinicians and scientists’ opinions. Partly this is because it would be unfair to ask patients to make decisions that are outside of their knowledge. He would encourage other researchers to involve patients because they will find it rewarding.

Patients gave new insights into outcomes that mattered to them for a questionnaire David was developing. It has changed his thinking.

As a quick example of that, we developed a thing called the Activity Participation questionnaire – the APQ – which is a form which goes alongside an established outcome measure, the Oxford Knee Score, and asking patients what they wanted on that form as a set of questionnaires. It [the content] was quite remarkable compared with what we thought might be on there. So, it wasn’t just about pain, it wasn’t just about function, it was about very specific things. Could they pop in and out of a crowd, could they run across the road? It was very important to get that sort of insight.

The message there is that we started off in one place and we have moved an extraordinary distance in terms of PPI and how we think about things. For me as an individual that has been quite a journey as well. I was very sceptical I've got to be honest, initially I thought, 'Oh we've got to engage these people,' and rather reluctantly, whereas now it's a really rich resource to tap into. And you end up with a better research question and better research.

It’s important to involve a range of people. David says good chairing is essential, along with careful listening to the points people are trying to make.

And so what else does it look like? It looks, in practical sense, when you actually come down to doing it – choosing the right people, and people choose themselves as well. That’s ever so difficult to manage because you do tend to get the same people cropping up. Some of them are brilliant and you want them, but you'll get the same flavour all the time. It's good to have different flavours and different approaches. You have to be very patient because the way that we talk sometimes in science is very different to what patients can speak like, and you have to be able to translate. It's almost like listening intently; i.e. you're not particularly good at the language and someone is speaking in your language, you go to another country and you and I might just talk very comfortably. Whereas if somebody's not speaking in their first language you have to listen a little bit more carefully. You have to do that with PPI, because people are telling you things. They could be very important that you could miss them. You have to have this sort of interpretation mode on all the time. [Loud engine noise]

The other thing I have to do is not be afraid of opinion. People can have opinions, and if you're somebody who's going to be scared of listening to things and achieving a quite – sometimes forcibly [sometimes not] –opinion about something you have to be careful and accept that. You need excellent chair people for PPI meetings that you have so that they can cut through things which are unnecessary, but pull from the things which are very important. You need to incorporate the PPI and whatever it is. Again it's a slightly abstract notion. But when you’ve got the information which has come into you, whether it's on outcomes, whether it's on the research question, it's how you're going to go about it you need to incorporate that into grant writing or your project, protocol or description right from the start. That makes it much better. I see things all the time as a reviewer, and there's clearly bits which have been written by the scientist and the clinician, and there's bits, which is, 'Oh this is now PPI.' The better ones that are coming through now have a beautiful amalgamation of the two, and they, you know they speak to each other.

David describes how experience of involvement has changed his thinking from scepticism to seeing real value in it.

So early trials we tended to have what I would call tokenism for PPI where, as researchers and clinicians and academics, we felt we knew best and set research questions; set the whole scheme of research and, as an afterthought more or less, thought we'd better have a patient or somebody who's involved on it on the other side, almost rubber stamp it. And that process involved picking a friendly patient who perhaps one of the clinicians or myself had seen, and bringing them in to sit in a committee meeting, probably without the expectation of a great deal of involvement. It was ever so slightly patronising I suspect, and it didn’t embrace what we now know as proper PPI. 

I'd run a trial in the past where we operated under that sort of sentiment. It got funded and it just shows you how things have changed, but we've moved a long way from that. More recently we've just put in for a new trial on anterior cruciate ligament deficiency, and the process has been considerably different. We started off by, before going anywhere near any of the clinicians, which we did do subsequently, going to patients and asking whether they thought the question that we felt was important, was important and they would share it. And right from the start it's been a sharing of whether this is correct or not. Once that’s been done then we of course to further clinicians and went to a wider field which is still part of the PPI process. But it was soliciting opinion at a much deeper level than we've ever done before. And the people who were involved in that were not there as to having – so it wasn’t lip service, it wasn’t somebody just sitting on a committee, but we really did need to mine their knowledge and their information right from the question phase, how the trial might be run and to the point of setting out the measures. And outcome measures being what we should measure which would dictate whether the treatment had been successful or not, and that’s really important. As academics and clinicians we tend to think we know what is important to patients, and that’s often not the case, so we put forward a form or an assessment or some sort of questionnaire, or even an objective clinical assessment, and they’ll probably balk at it and say, "I'm not sure what you're asking; why's that important?" So, we have to change our mind and maybe think about something different. For me, it's been helpful because I've been involved in developing some of those questionnaires, and it makes me realise that what we think we know we don’t, and the patients often tell us something entirely different.

David advises people like him from a ‘hard science’ background not to be ‘prejudiced as I was’. It now annoys him to see colleagues dismissing patient input.

Keep your eyes open and don’t be prejudiced as I was to start with. You'll find it quite rewarding once you get involved in it, and you'll perhaps see things from a different light. My circumstances are quite unique because I was very much sort of engineering and quantitative hard science, so this was a world which was opened up to me in a different way, particularly with other qualitative recruitment issues with my trials. But I sort of, the door opened and I was suddenly aware of it, but now it's a really important part of what I do. So you’ve got to try it, you’ve got to get your feet wet and have a little dabble in it, and don’t do it if you're a very impatient person – I would give that piece of advice. So, if it's not for you at all then leave it to people who'll do a good job of it. We don’t want the wrong people doing this I don’t think.

Yeah that’s a good point about the wrong people doing it because we talked a little bit about who the right patients were.

Yeah.

So, there's the right researchers as well.

Yeah, so you will see in meetings where people try and put words in other people's mouths. You will see instances where somebody has such authority or self-belief, or perceived authority, that their word is final no matter what. The patient can talk about whatever they want; in the end they are put down because I still am the authority on this one, sorry, thank you very much. So, we have to have some antidote to that, and that really annoys me when I see that happening. So it's all kindly of patter patter, yes lovely, would you like to speak Mrs Smith? Yes, no, yes fine. And we're all fine, but at the end of the day we're going to do. 

The backing and support of David’s local Biomedical Research Centre helps keep involvement high on the agenda and makes it more likely to succeed.

Just thinking back to sort of the doing PPI, when you first started doing it and, you know sort of your journey through to now, has it been easy to integrate as part of your job?

Well it has relatively been – for me, with being you know a trialist and running a clinical trial's unit, not so bad because it's actually a vital component of it. Time wise – no not necessarily. Getting people together and all the right time is very difficult. We also have a policy where you have to have PPI for certain, trials steering committee for instance, and if you don’t have representation there that committee can go ahead. Because you know the patients have, you know got time themselves, they can't give up reams of time or to come and service your needs. In the main I would say probably yes. Things like the BRC have been very helpful though. When you get a ground swell of support for these things - it's funny how things get support and things don’t. It could have been something very different [subject] in genetics, coding or something like that. But at the moment PPI's considered to be very important, correctly in my opinion, but not in everybody's opinion. And it's got a lot of backing and support behind it and things like the biomedical research centre unit, of which we are here, puts funds into that and makes sure it stays quite high on the agenda. When that happens in an academic institution like this, and linked to the hospital, then you’ve probably got more likelihood of it being successful, and it not impeding your day to day work as much as it might do.

Involvement is here to stay but David worries that we need to be careful it does not go too far. He has seen good projects turned down because their PPI was not perfect.

Well I've already mentioned that I think it's got – it's here to stay. There needs to be some control of it and not let it run out of control because I've seen that happen with other things in the past, and you just need to mention the name PPI and floodgates open for funding or whatever it is. I've seen very bad decisions made in terms of a good project being turned down because it's not quite up to scratch in terms of PPI. I think we just have to be sensible about it. How will it change? Mm the groups, the organisation of it is in place now already so that will progress and get tighter, and I like to see that. Probably the foundations are in place already and it will be increasing sophistication. I think some of the clutter of the PPI will be cut off it, and the fat will be cut off and we'll end up with a very nice lean process with a better understanding of it. I suspect we don’t really understand PPI properly yet. So, from a researcher's point of view how that process works, how we pick them – I mean you touched on it already with that there. What makes a good person; should you have them there; should it be professionalised? All those questions are research questions in themselves. And so they’ll be a raft of research which looks at those sorts of things, and hopefully that will generate, higher quality PPI as well. I think it's progressing well, it'll be good…

No I just don’t want the emphasis to be, or it to be over-emphasised. There has to be an emphasis and we've, you know have covered a lot of ground talking about what's good and not so good. But it's just about, you know getting the right emphasis and not going too far with it. Again that’s a subjective, it's an opinion and I don’t know what, where do you stop on that? There'll be a government agency which says that this is the most important thing from now on and we will all have to adhere to it. But on the ground I think it has to be moderated... Otherwise you end up in a place where you'll lose out on the other side you know. It's a bit like discipline in schools, or in universities, where you get to a point where the students have so many rights that the teacher has no rights at all, and they almost give up. You’ve seen that happen. We don’t want to get to that place where PPI is king over everything. That would be wrong in my opinion. We're a long way from that at the moment, but we should just be mindful I think.

David has come to value involvement, but he explains several caveats and worries, including trying to find a balance between the knowledge of patients and researchers.

And science tends to be split into sort of more numerical hard science, and more qualitative, and you tend to be brought up in one school or the other. As you develop and become more mature I think you realise that science is a combination of the two, and this gave me another side to it. You have to have your eyes open and willing to accept it, and there's some people who aren't. Once you have discovered that this is a rich vein and actually it's probably more important than some of the things that you think, there's no going back. And the James Lind Alliance, that process of going through it made me realise that this is very important to set those correct questions and get the right framework for it.

There's caveats, so I think you have to be careful you don’t take it too far, I'll probably talk about that a little bit later because I think there is a perception sometimes that PPI is the “be all and end all,” and I think we have to be slightly cautious of that. It's a bit of a pendulum; I see it swinging both ways. So, there was nothing as I said before, and it's swung now to the other direction where we have to be cautious that we don’t undermine clinicians and scientists' viewpoints. Sometimes they have a very fair opinion, and sometimes the core of the decision making has to come from that body. It's helped by the other side but it's unreasonable to expect patients, and sometimes clinicians who aren't involved in it, to really fill the void space of knowledge when they haven’t got it. So, it's a nice combination of the two together, and we may be swinging one way a little bit too far, but we can come back to the middle at some stage.

Why do you think it might have swung one way too far?

I think that’s a combination of things as a knee-jerk reaction to. People like hobby horses don’t they, for one thing – so there's a bit of hobby horse going on I always think that, you know this is a new, something new, something innovative and you have to tick this box. The funding bodies have grasped that as well so it has gone in that direction. And to get from, you know we shouldn’t hide from the fact that a lot of these things is about getting funding as well; the research won't go ahead, so there's some box ticking to be done. But it has to be very carefully worded as a box ticking exercise. It does need to be there in part of the submission but it's not box ticking in the old sense. And, maybe some people haven’t, they’ve allowed it to swing that far because it's a component which didn’t exist before and people like to sort of over enthuse a little bit about that. But that’s the only negative thing I say about that; it's not an overly negative thing. I think it's just a question of damping down over enthusiasm for it, and achieve personal balance I just like things to be settled in the middle.

Yeah OK. When you were sceptical about it, what were your concerns?

My concerns were that the patients were ill-equipped to make appropriate decisions. We were all knowledgeable and the patient was not, and they would mislead, which turned out to be unfounded. The other reason for scepticism was that some of my early involvements in forums with patients were not the best experience. In terms of domination of a session you'd sit round a table [and there's a limited amount of time] and someone would dominate discussion. As you get older you're very used to being efficient with your time and getting things done to get to place B from A as quick as you can. Patients wouldn’t necessarily see that so you had to be a lot more patient. I found sometimes that you could go down tracks which probably you didn’t want to go down. Secondly, if you had the wrong person, or wrong persons in those sorts of forums they could dominate and skew the whole picture. It ended up being less helpful than it perhaps could have been.

And I don’t think there's any other cause for cynicism. When you look back you wonder why it was not part of the original process. It seems very late in the day – we've been doing research for a long time, it's been only in the last five years probably that this has been very current. That’s 2010 you know; I've been researching for twenty five years and it just seems very late in the day to start asking people who are involved their opinion on matters. I'm slightly embarrassed about that.

David worries whether payment for involvement changes people’s motivation. But he can also see why it’s important.

No, it's a double edged sword. I think I can see the reasoning behind it. I mean why should somebody give up their time and come and do it for nothing? By the same token I feel the same way about medicine though. Once you start and introduce fiscal rewards and things it sort of queers the pitch a little bit, and you do wonder whether you're getting, you know the best representation that you could. So, I'm not against it; I think it needs to be controlled, and I'd like – if people, you know their employers are happy to release them to come and do that without a cost to themselves, then that’s absolutely fine. Of course travel and things should be catered for, but I don’t think it should be an income, and if it gets to an income for people, and that’s what they do, then I'm concerned about that. You know the analogy though is charities. I mean charities, and some of the best charities, pay good dollar for the best people, and then that sort of irritates individuals, "Is that right?" So that’s the sort of perennial argument – do you, should charity be all charity or do you have to pay for a certain amount of quality, and that’s the way it is. I've kind of mixed feelings on that if I'm honest, and I'm going to watch that space.

Ideally it’s good to have a mix of people with involvement experience and people who can bring some fresh perspectives.

Yeah well what do you want? In an ideal place, and I'm just thinking off the top of my head. In an ideal PPI experience you'd have a combination of those individuals. It would be lovely to have the naïve ones, but it would also be nice to have those long in the tooth who have been through it before. And we have some great examples, because it does take a bit of getting used to and some of the more recent projects that we've set up and I've been involved in, we have used similar people. They're so comfortable and familiar with it that it makes it much easier. So they know they’ve got a voice. They know when to speak and when not to speak, as everybody else does. It just works well if you’ve been through it a few times. They’ve seen somebody being patted down a bit if they get a bit over ambitious or dominating. That side of it is very good. They lose their naivety, yes of course, is that a bad thing? I'm not sure. Not if you take away the – remember what you’re after with PPI is to get at something which is relatively raw. If it's totally processed at the end, then I think you're going to lose some, the benefits. So again, a little bit of both. If you can bring new people in all the time and still have established individuals I think that’s the best. I certainly wouldn’t advocate having all people who've been around for a long time, and I certainly wouldn’t advocate having a whole bunch of brand new people because that’s quite ‘hard yards.’

It’s good to involve a range of people but you can’t represent everybody. Sometimes you risk ending up with too many people and it becomes inefficient.

And I think probably going back in time that was a little bit what it used to be previously. It was a sort of dumbing down of their role in some ways because they couldn’t be representative, because they didn’t have sufficient knowledge. I think that would be a mistake. Of course you're not going to be able to get everybody. Well the interesting question is, do you apply a sort of methodology to it and you end up having a representative sample of the population that you're interested in to come on the PPI? Now, the advantages of that are of course you end up with better representation; the validity of the whole model works well. The downside, and I've already seen this with the James Lind, is that the process becomes even more protracted and your law of diminishing returns probably comes in. You have to decide how far you want to go to. And I am cautious about that. I think there is a danger of going too far. So, at some stage we have to make this process a bit more efficient. James Lind, for example, can be a set of six/seven meetings of sort of filtering this down, which is great and it's good for learning, but I think there's some places in it where we can compress.

Sometimes someone who can give both a professional and personal perspective is useful.

One usually, occasionally two. Yeah, difficult. Remember there's some hybrids as well in there. These are interesting individuals where you’ve got somebody who reflects a professional opinion, but it also has been a patient. Some of the studies that we've used, for instance the shoulder one, CSAW shoulder arthroscopy, we had our ethicist who was very important to this placebo study, and also had the same problem, and had his shoulder done by one of the surgeons here. So, he had a dual role. I think it works but I wonder which way they gravitate patient or professional. Should you keep them separate? I don’t know, that’s an conundrum, I don’t think I've got an answer to that, but it's worth thinking about. Is the hybrid individual good? You're tempted to do it because it's very efficient, they can serve two purposes. You lack something, but you gain something as well.

David advises people who get involved not to be afraid to say what they think, but also think of it as team work and to see it from the researchers’ perspective too.

Now the people already involved in it know about it so that’s fine. But I would encourage them to continue and fine tune their PPI knowledge. It doesn’t stop just by doing a couple; I think you can learn as well as you go on. A few things – don’t be afraid. If you think what you’ve got to say is important get it out there. If you're scared about your vocabulary and your knowledge of the area, again don’t let it be an impedance to you, and hopefully the set up will allow that interpretation to go on. Now, if it's a good PPI group, that will occur, if it's bad you might have a bad experience. But I strongly advocate that you don’t hold back on those sorts of things. I would also say that just like the other side it's not a one way street, but sometimes if you think you need to look at it from somebody else's point of view and that can be difficult. It’s great to be empowered – but it's not the total power. This is a team approach, this is two sided. The clinicians, the scientists have to listen to the patient side of things just as much as the patients have to listen to the clinicians and the scientists side. And sometimes that can be forgotten a bit, I'll give you an example – everybody has five minutes to speak on the subject; the patient goes on for twenty and we all think it's OK because it's the patient. Probably not right, everybody has to be thinking about each other's position and look at it from their own point of view. I'm not sure I'd say much else.