[MUSIC] Hi, I'm here with Steve Brett, who's a consultant in intensive care medicine, and professor of critical care here at Imperial College. Thanks for talking to me, Steve. So as an intensive care specialist, you're almost at the opposite end of the clinical spectrum from someone like me in public health. So I just wondered how you got into the specialty? >> Well, about 21 years ago, we started doing some long-term follow-up studies in patients who had survived their critical illness. So we were interested in mapping out what their futures looked like, what survivorship, as we've come to call it looked like. So we started doing work looking at people as they recovered. And almost at the same time, the concept of intensive care changed somewhat. So whereas previously, perhaps people had thought that intensive care was simply a box in the middle of the hospital into which the very sickest was stored for a while. Then the whole system changed, and intensive care started to spill out throughout the institution from the point of admission, to the point of discharge, and perhaps beyond. So we became much more interested in risk factors for both the onset of critical illness, development of critical illness, and also, those things associated with outcomes, be they good or bad. And so our Interest really stemmed from that. >> So that takes you right into public health, really. >> Exactly, and we became much more interested in outcome measures that were actually long-term outcome measures. So whereas previously, most studies had had an endpoint of survival to 28 days. It wasn't really a very patient-centered outcome, and it didn't reflect quality of life, or future at all. So we fought back against regulators who wanted us to test things against that. And now we tend to have much more sophisticated and longer term follow-up. And that was also what patients told us, they thought were more likely to be useful outcomes. Okay, so specifically, I know that you've involved patients carers and the public in some agenda setting exercises, one called the James Lind Alliance Process. So could you just explain a bit about what that process is, what you did it for, and what you learned from it? >> Okay, so first off, who was James Lind? Well, he was actually an 18th century Scottish physician who worked for the Royal Navy. And the time he was working for the Royal Navy, scurvy was a major issue. So long duration voyages, often, the sailors got very sick with scurvy. And we now know that was due to vitamin deficiencies. But of course, at the time, they didn't really have a clue. So he actually had a few notions of what might be helpful, and he conducted a comparative, in fact, evaluation. And he had a group of people with scurvy. Some he gave seawater to, some beer, some reputedly sulfuric acid, and some citrus fruit. And of course the ones who had citrus fruit did better. So this was something of a very early, if rudimentary clinical trial. And from that, that altered the practice in the Royal Navy. And eventually, they started taking citrus fruits away. And hence, in North America, English people have been known as limeys, and that's the origin of that particular phrase. So James Lind was an early trialist, although, not the earliest trialist, but his name had become associated with trials. And a fair while ago now, people began to think that when we're planning to research, and what we're going to spend public money on, then simply deciding that with a traditional sort of smoke filled room of men in suits was no longer really adequate. And we needed to involve the patients, and their families, and carers, and the wider clinical community. So the James Lind Alliance was set up, which originally was independent, and is now run as part of one of the arms of the National Institute for Health Research. But run on a pretty standard methodology, the idea being that we bring the whole community together. As I said, patients, carers, family members, bedside clinicians who are involved in patients care, not usually people who only have a sort of back office laboratory role. But it's normally people who actually have a role. And the professional roles are various, so nurses, physiotherapists, all the Allied health professionals. They are encouraged to identify where we seem to lack knowledge of how to manage people for particular conditions. >> So when you first got into this, what was the question that made you go to, or was it a particular area that made you go for that approach? >> So I ran this on behalf of the Intensive Care Foundation. And we had got to a point where we were running a few clinical trials that we'd identified the need to do those through our own professional community. And we became aware The James Lind Alliance was working with other groups, and it just seemed the right time to do this. So we had some funds that we were able to put into setting the process up. Our real challenge, of course, was that for many of the patients in intensive care, they have very little real recollection of what went on. And often, the environment is so odd and hostile to patients, families, and carers, that often, they don't know what's going on either. So that meant we had to modify the methodology a bit from what had been used in the many previous priority setting exercises. >> So what were the first steps of doing a priority setting? And presumably, obviously, you've gotta get your stakeholders together. But then, how do you actually set up there? >> So we started off by working out what the scope of the project would be. And then we looked at some of the previous James Lind Alliance projects. And we worked out how we would have to modify the methodology that had been previously used. And then of course, we had to work out how we would reach out into both our professional colleagues, and also to patients and carer groups. And that proved, actually, to be a real challenge, identifying networks that would be able to help us reach out. And also, to make the process seem unintimidating to patients and their families, which is very important. Otherwise, you won't actually get any real engagement. >> And did you bring them together physically? Or I mean, what are the processes of doing that consultation? >> So we did have a whole variety of things. The project itself ran as a modified Delphi method. So we ran a few phases where we very much encouraged people to identify for us what we call treatment uncertainties. So rather than ask people directly, initially, what projects we should run, we wanted to identify where there seemed to be genuine uncertainty around clinical decision-making. And that's actually a better way of doing it if you're using the whole community. So we ran a whole variety of things. We used online surveys. My research coordinator, Hannah went out and visited a lot of patient support groups. We have great cooperation from an organization in the UK called ICU Steps, which is a peer support group for ICU survivors. So they had support groups up and down the country. And Hannah went and visited many of those. And from those, and from web delivered surveys, we were able to develop input from patients, and carers, and then the professional community. We reached out through professional organizations and networks, and we were able to put all that together. And then we did this two or three times, and we started off with some 1500 odd treatment uncertainties, which is almost unmanageable. And then over the next two or three rounds, we gradually went through an item reduction phase, where we gathered together things which seemed to run under particular headings. We got rid of duplicates, etc. And then the final phase was a nominal group, a focus group method, which we ran with a group of interested patients, carers, and professionals. And that's where we'd actually whittled the 1500 uncertainties down to 36ish plausible research questions, and eventually, we went down. Our target was ten. But eventually, we had to sneak one in at the end, because there were some real challenges with managing that final focus group. >> So you ended up with 10 or 11 research questions that were relevant, and have some kind of buy-in from people. So of those, I mean, it must be quite hard to go from thousands to 11. But were there things that came up that you think wouldn't have come up if you hadn't involved patients and carers? >> So there were some individual things. But what we got out of it with the involvement of patients and carers were their broad areas that they felt were really important. So obviously, clinical and scientific colleagues were sometimes very focused on highly technical things. And if we'd allowed that process to be dominated, then we would have missed out on identifying the areas that seemed to be really important for patients and their families. >> Can you give an example of the kind of things, that would, that it tilted towards in that case? >> So many of the things that perhaps wouldn't have come through so strongly were around the care and comfort of patients in the intensive care unit itself. So not highly technical things, but perhaps devoting some energy into working out how to care for people in a comfortable and kind manner. And one of the interesting things where we all came together was the issue of delirium. And what was very common ground was the fact that we don't really know how to manage delirium. The patients hate it. Their families are terrified by it. We find it very frustrating as professionals, because our tools to manage it are extremely limited. So actually, that ended up being one of our top three priorities. But we also had some priorities identified around how we care for people, how we make the environment more comfortable. And we also had fairly common ground on identifying people early who were likely to benefit from care in an intensive care unit. >> Mm-hm. >> And perhaps one other important thing was about supporting people at home, which perhaps wouldn't have come through so strongly if we hadn't had it exactly. So how do we support families and patients once they've transitioned into a home environment? >> Mm-hm. >> And I'm not sure that would have come through with such a sort of moral force behind it if we'd confined ourselves to professionals. >> That's really interesting. So you've talked about the process, and some of the challenges, obviously, there are many challenges. Have you had experience of other forms of public involvement that you found useful, or different from that? >> Well, we did at one time have a project running through the UK called Enhancing Recovery After Critical Illness. And we ran a very useful focus group with an ad hoc group of patients and family members. We ran that at the Royal College of Anesthetists, and we learned a lot from that. That was entirely patients and family members, and it was very much focused on rehabilitation recovery from the point of really, once people's immediate threat to life was over. And we were working at how to plan their care within the intensive care unit in a recovery rehab context, and how that would map out through the hospital, and maybe into the into the home. So that was a successful enterprise. I think what we learned from there, which perhaps wouldn't come out of a professional driven thing was how important motivation is. And what often patients' families told us was that if we don't pay proper attention to patient state of motivation, then your intervention may not work at all. So if, for example, the intervention proposed is a intense period of physiotherapy, which may be exhausting, uncomfortable, painful. Then unless we have backed that up with methods to help people with their motivation with their engagement, these sorts of things, it won't work, because people will simply not be engaged sufficiently. And in fact, when we look back at some of the trials that we've done, probably the thing that was missing in the intervention. And possibly in the outcome measures were issues around motivation and supporting people doing stuff, which might actually seem very, very challenging. >> So it sounds like you really do benefit from this different perspectives that you're getting from this kind of work. So what would you say where the top challenges doing either The JLA James Lind Alliance approach, or other PPI things? >> I think the big challenges that we've had, there were two. The first one is actually reaching out into the patient and family community. And it may be that critical care has unique challenges there, and that other disease areas where there are much stronger, better developed, patient support outfits find that easier. I think common to many areas will be how you manage a focus group part of a program, where you invite patients and their family members together. And you're running a focus group where you may have some very dominant characters. Who have particular things that they want to push, and you may establish sort of maladaptive power relationships within the focus group, and that can be really challenging to manage. >> Mm-hm, I think that's a really good lesson. But all of us involved in, whether it's public involvement, or even working with staff groups, and so on. Those issues really are- >> On the one hand, the focus group can develop a dynamic all of its own, which almost gives people permission to talk about stuff. And people may say things that they might not in a one-to-one context. But on the other hand, it can run a bit out of control, and one or two individuals who have particular issues that have been winding them up may seek to dominate. And unless you are prepared for that, then the thing can run a bit out of control. >> So that's one of the things, obviously. Our students, who are learning how to do this, need to learn how to facilitate these things, without allowing individuals to skew it towards one particular... >> The other thing I've learned is that actually, how you stage manage a room actually makes a difference as well. So what I've found is that a sort of classical boardroom setting with a table with people around the table, and the sort of chair in inverted commas at one end. For me, that doesn't work. And that the reason it doesn't work is that it's hard to pick up on the nonverbal cues that may be coming from quieter members of your group. >> Mm-hm. >> So what I've tended to do in this and, and in other settings, is actually have a horseshoe type arrangement if I can make it work. And I go in the middle, and then somebody else can take notes. But I found personally, that I'm more sensitive to nonverbal cues from quieter members of the group. Who've got stuff they want to say, but a little bit reticent about about forcing themselves verbally into a conversation. But you can sense that they've got stuff that they want to say. And I've personally found it easier with me in the middle being able to sort of rotate my attention round, and then encourage people to contribute. >> That's really valuable. Anything else that you wanted to share about public involvement? >> So it's not easy. I think it's always worth running your survey instruments in a practice setting. However hard you try and work on simplifying your language, making the things seemingly accessible, you will never have it perfect right first time. >> Mm-hm. >> And it it's a good investment to test your instruments to destruction before you actually go live, and it will save you time in the end. That's the one one thing I'd encourage people to do. >> Thanks very much, Steve. That was really informative. And I hope you've enjoyed watching that, and find this useful when you're learning about participatory approaches in general, and even applying them in something like critical care. Thank you. [MUSIC]
