Transcript of Simon Denegri's presentation at the January 9, 2014 Strategy for Patient-Oriented Research (SPOR) patient engagement workshop

Mr. Simon Denegri: So yes, thank you - thank you, Jackie, and good afternoon.

So my - my job in the next 20 to 25 minutes or so is to make sure that I don't say anything that makes you choke on your lunch and that I ease your digestion. In fact, I was part - I was thinking about saying to Jackie maybe that I shouldn't speak at all because you were doing so well before we broke for lunch so I don't want to interrupt what's turning into, I think, a very fertile day from your perspective.

But I did think - and one thing I should add to the biography that Jackie gave is that I am on the SPOR Review Panel and one of the reasons I'm on the SPOR Review Panel is because of my background in public involvement and public engagement, so I just thought that would be helpful for you to know.

So I did think when I was planning this talk whether the first part of it should be about or I should re-title "Organizing for Success" because I think one of the stories hopefully that you will hear from the UK experience is around how you organize yourselves both within your organization, but also across organizations is going to be extremely important in whether you're able to deliver success over the next 5 or 10 years to everything from how you insert public involvement in terms of your governance to how you support and train people and how you really organize yourselves which I think is going to be very, very important and it's going to help you, I think, deliver and enable some of the things that you've already identified as things on your - on your Board.

I'm also going to look, towards the end, quite closely at some of the practical impacts that we've seen emerge and some of the challenges. And I suppose one of the things I'm very concerned that you don't hear from me is the sense that the UK has got it right; aren't we brilliant? Because yes, we're very proud of what we've achieved in public involvement, but we face exactly the same challenges as you. We're worse at some things and we're better at some others and one of the reasons why I was very glad to take the invitation to come here today was to learn and to continue to share experiences and share what's happened because I think that's very important and going to be increasingly important as research becomes ever more global.

So I wanted to begin with this slide if I can find it. But why should I really begin with the why? Surely we all know what the whys of public involvement are. We're going to come back and talk about terminology in a minute, but when I look back over the last two decades of my own personal involvement in this area, it's interesting to me how the why has changed somewhat. So when I think back 20 years, the significance of why was really about - around the morality, the moral argument that people who research were supposed to benefit should be involved in the decision-making around that research. There were very strong moral driver behind that and one would know from the HIV-AIDS world that one of the key groups that led that, if not the key group that led that, was the HIV-AIDS community.

Certainly in the UK if you talk to people who are founders of my organization, INVOLVE, they would say it began with people literally protesting outside of the Medical Research Council to say, "Why are you not funding research into this condition and this disease?" And that moral outrage, that moral indignation, I think, is very important to remember even though it's changed; that the anger that patients and the public feel out there is something that we need to capture and to manage and to use to make change happen within research and it's not something to be ignored. It's a very powerful thing.

But nonetheless, the whys have changed and they've become much more strategic and they will become much more strategic for us and they've become much more strategic for organizations. And I'm not going to go through all of these. I mean many - we've already touched on, but I suppose the three that are in the ascendant for us in the United Kingdom at the moment are: 1) accountability and the scrutiny of decision-making across the health service, but including health research.

So you may be aware that over the last few years, we've had some really significant and quite terrible scandals within hospital environments around the care of people which really caused a crisis of public confidence in how our health service is delivered and the drive within the Department of Health is really to how do we strengthen this relationship? How do we rebuild, strengthen, improve the relationship we have with the public? And similarly in health research, although we are not - we don't have those same issues cropping up, certainly we have a strong sense of ensuring we have the right mechanisms of public involvement that deliver appropriate accountability and scrutiny and transparency and other things.

The other things is demonstrating how actually public involvement can deliver better quality research and I'm going to talk a little bit about how that really comes from the top of the organization in National Institute forHealth Research and how it derives better value in terms of research and more efficient research. These are highly strategic aspects of a partnership that we are now trying to build with research and I think it's important to think about your pitch out there, that it's not just about the - morally the right thing to do; it's also about actually helping to deliver on the business at the end of the day and deliver on the bottom line and making it relevant.

I think the last thing I was going to say about this slide is you'll see there's a certain person who then had a beard; i.e., me wearing a tee-shirt there, and I've talked about the story behind the tee-shirt, but which if you can't read it, it says, "Public involvement in research is the new black." And certainly in the UK, there's a real sense of a tailwind behind this area, so if I just told you, for instance, that the INVOLVE website, which we'll see in a minute, January 2012 when we redesigned it, it had 17,000 hits in that month. In August of last year, it had 71,000 hits from people who were looking for information and advice around public involvement. So that's a - I know website statistics are not the most robust statistics, but it tells you a story of sorts. But we have to be very, very careful here I think. I may not be kindly thought of for saying this is that we are in danger of becoming so overexcited about this that we're not careful about thinking where our focus should be.

We have a massive agenda up there as patients and the public, people who want to deliver this. What I sometimes see is that organizations who want to do this and are committed to this, because they are not focused; they try and put public involvement in a very haphazard way across the whole organization until it actually smothers the organization and actually leads to no return for the patient or the public members of that organization and what you really need to do is find focus, what's going to be your priorities and to build confidence around success in those and then move on to your next priority. So it's great that we have a tailwind, but we have to be careful where that's sending us.

So this is our - what you call, more or less, public engagement, we call public involvement. And this is our definition of public involvement. It's intentionally - it's been around probably 12-13 years now. It's intentionally a very broad statement. We intend ourselves to be an inclusive and quite broad church in terms of who we partner with, who we work with. It is not to everybody's liking.

I suppose what I would say around terminology is it is an extremely important piece of the - or piece of what we do, the language that we use, the language we choose to use in this context.

But again, I suppose my experience in the UK is that there is no right or wrong answer here. There really isn't. I can tell you after 20 years there isn't a right or wrong answer, but what you need to do, I think, is decide on what the terminology is that you're going to use, know why you're using it and stick to it and be consistent about why that's the case.

I don't think you can negate the debate. You don't want to get rid of the debate. Debate's important. Language evolves. We should always recognize that and think about the changes that we need to make. But I think it's - organizations can get really, I think, hung up on the language and terminology almost like barbed wire and I think it's really important you try and avoid that.

And we think very much around public involvement as influencing the decision-making, design delivery, dissemination, and prioritization around research. We would regard engagement really around the dialogue that we would hope to be promoted between research and patients and the public out there and then we would regard participation as, you know, perhaps the most straightforward aspect in which people are taking part in a clinical trial or a piece of research or filling out a questionnaire.

Now, I live the tension between those things all the time because I am Chair of INVOLVE, but I also have a formal government role which is around encouraging greater participation. And I think the challenge for us and I think the challenge for any organization doing this is to think about, not the differences between these two, but the complementarity between them. I was very struck when I was in Calgary two or three months ago by the comment from a wonderful, very assertive woman who said, "I don't really realize why it has to be so complex, this terminology. I just want to make a difference whether it being involved in the decision-making, whether taking part in research or being able to disseminate that research and help people understand it better." So I think there's a danger that we overcomplicate things. So just to - that's a few words of background for the terminology we use.

So let me tell you a little bit about the National Institute for Health Research which is more or less a similar body to the CIHR; not exactly the same in terms of structure; I'm not really going through all the structure and things. But I think we took some very wise decisions early on, I think, that have made us perhaps more successful than most other government funders around public involvement. And in a sense, this is a story around culture change. What we're talking about in this room is culture change in its most elemental form.

So the first thing is we started off from day one, so NIHR was founded in 2006. It's actually modelled on CIHR or some of the aspects of CIHR. We have about $1.5 billion Canadian dollars equivalent of research going into the system every year. Founded in 2006 and we said from day one, "This is going to be a core principle - public involvement is going to be a core principle of the way we do our business."

Now, I know that at that time a lot of people said, "Why? Where's your evidence?" I'm sure I'm going to get that sort of question from the audience I'm speaking to this afternoon. And yes, it was a leap of faith and it goes back to perhaps some of the things I said earlier about being morally driven, but at that time, our then Director of R&D felt it was the right thing to do from her experience having seen public involvement impact on the ground that we had it as a core principle. But I think if you don't have it as a core principle in your mission, values, et cetera, et cetera, then I think it's very, very difficult for you to live and breathe it.

The second thing is it's led from the top, so my boss, the person who appoints me, is our Chief Medical Officer, our Director of R&D, and she's the one who very much leads it and expects it of our strategy board; our main governance mechanism, but also our advisory boards and the different parts of the infrastructure and she's the one who will go out there and be a champion for this and say, "Public involvement should be the rule and not the exception in research." I mean, how fab is that to have a medic out there saying that with us from a public standpoint? So again, as you'll know from cultural change theory, if you don't have leadership from the top, it's not going to happen.

We were also, I think, fortunate having a solid platform on which to build. Sorry that INVOVLE has slipped down, but INVOLVE is the organization, what we call a national advisory group and I'm going to talk about that in the next slide, but INVOLVE which has been sort of in the wings, funded by our Department of Health for about 10 years at this point and have done a pretty good job but haven't got a real roof - a safe roof over it, haven't got a continuous stream of funding really, but NIHR decided in order to make this agenda a reality, it would bring this small organization under its roof and it will be a formal program of what NIHR does and it will be a formal way of supporting delivery of public involvement across NIHR. And I think you do need that solid platform and I'm not trying to put my colleagues in CIHR in a difficult position, but you do need solid platforms, infrastructure, resources on which to build this; otherwise, it won't live and breathe in the way that you want it to.

Culturally, we've set a very clear expectation with the research community but, as I say, we were going to do this thing of core public involvement and so were they. So now we've reached the point where anybody who's applying for funding for us, whether it be for a project grant or for running a piece of infrastructure running into tens of millions of pounds, they are required to, as part of their application to us, to put together a public involvement strategy and plan which is resourced, which has a budget behind it. It's tested by lay reviewers as well as scientific reviewers. It's tested at each new panel stage and then assuming that people have been successful, that then they're required to report it in terms of their annual cycle. So it's quite rigorous and it now has got to the point, I think, where it's a public involvement component of relevant research that can either be a marriage maker or a deal breaker. While I have been - I sat in review panels where applications have been rejected because the science is good, but actually the public involvement component is completely inadequate to deliver what they want to. Clinical trial might be a good example of that.

But we're not a sort of though shall do this or though shall not do this approach by and large. It's very much going back to what you've already talked about; trying to build this on partnership and mutual respect, and we've tried to adhere to that throughout the course of the last - generally the last 10 years. But as I say, you do need to put support behind it and it's quite interesting to me that where we're best, I think, is where infrastructure comes along and we're now seeing quite significant units or institutions coming to us and being awarded funding who are budgeting hundreds of thousands of English pounds for public involvement.

Where it's not so good is in terms of the general run of the mill operational budgeting by organizations and in particular in specific research projects and that's something I think we need to address, but there has been millions of pounds of investment in it. We're just about to do a real strong review of public involvement in NIHR and one of the questions that we want to go out and find out is actually how much money has been spent in public involvement because I think we will be quite surprised by the thing.

So that's given us a sort of 10-year momentum to the point that in the - it now seems to be a strategic priority that sits alongside and is meant to help deliver things like our growth strategies. So we have a whole mission, a vision in NIHR, which is where I'm delivering; the health and the wealth of the nation. The patient-public relationship that we have is seen as essential to that. So this is a bit of symbolism, but in politics symbolism and language is very important. In the NIHR annual report this year, the patient and public chapter, that involvement, engagement, participation came first before even the chapter about growth. That's a really important statement to make as an organization; that it's about patients and the public first and - first and foremost.

So I think the organizers are going to make these slides available to people so where I have been able to, I've put in links to the various documents I'm - I'm mentioning.

So let me talk about INVOLVE as an organization because it's quite a curious body and I have no doubt it will change quite a lot over the next two to three years. But we started in '96. We were formed by primarily some really vocal patient advocates for research that was prioritized - should prioritize the needs of different conditions that were being ignored at that time, some of them were charity chief execs, some of them were just people who had just had the role of campaigners - grassroots campaigners. But it was funded from - by the Department of Health from the very beginning. But it had very strong advocacy roots, at that point, so advocating change and a sort of campaigning air to it.

And we've morphed over the last 20 years into something that's quite different. In a sense the championing of research, championing of public involvement is probably, I would say, the third bow to our - third string to our musical instrument as it were.

We have two much more fundamental roles that we play; one is around supporting and guiding and capacity and capability - capability-building out there, both researchers and patients and the public, but also providing, I think, leadership generally across the system. So we're not - we're doing less of the advocacy. We're finding that's happening on its own. In some sense, it's through patient groups, through charities, through other mechanisms and it's more about how do we support the activity? How do we make that activity have an impact and how do we provide leadership and some guidance through some of the challenges?

And what does that look like in practice? Well, I think the first one has quite a political element to it; political with a small p, and I'm sure you'll find this as the SPOR develops that you will get and as were having at the moment, you will get a growing clamour core. We need some standards, you know, and we don't know what the quality of public involvement is. We need to set some rules and regulations.

Well, of course, one of the things that we would say as an organization is that we don't live in a world where you can easily do a commander-control type order from the centre which is, "You are going to do it like this." It's impossible. When I show you and talk about how NIHR has set up as an organization, it would be impossible to do that, so of course such a varied and diverse family, but we can set the tone and the style and we can establish frameworks so a lot of our work is working with the community, involving the community to develop some really strong principles and values for how we do things.

So I'm just going to show you this one is that this is one that's out for consultation at the moment and it's on our website and the links - I thought the link was there. It's literally on there, but not on there. But anyway, so these - we were asked to begin to do some work around standards so we went out there and looked at the different sort of standard documents that people have put together; not just in NIHR organizations, but in other organizations as well. And what we then did is produce a set of what we think of as pretty good values and principles for the way that people should be conducting public involvement across the system wherever they are and we've put those out into the – and we're now involving people in discussion of those and we're following those and that's a statement of how we want that mutual respect to look like as an organization.

So setting the tone and style for what happens out there is quite a significant part of the work and quite a difficult part of the work as you'll know. It's often nuanced. There's not a black and white to it. There's some fuzzy edges. It's very grey, et cetera, et cetera.

So the second bit I think is around networking the leadership across quite a distributed system now. So, now this is a very, very simplified diagram of what NIHR looks like. It's almost like an Impressionist, sort of, modern painting really of what NIHR because it's a lot more complex like this so when I think of just one region, you will probably have eight or nine different parts of infrastructure and they won't all be the same in every region of delivering some aspect of research and collaborating. That didn't exist 10 years ago, so whereas it was quite easy for INVOLVE to manage, to shape, to influence what was happening across NIHR in terms of public involvement, it's now almost impossible for us to do that on our own and what you're having in each and every part of our infrastructure - so whether it be a clinical network or whether it be a biomedical research unit, you are having public involvement plan, a strategy, probably two - one or two public involvement leads plus maybe a public involvement advisory group, so quite significant stand-alone infrastructure around public involvement in itself.

So it's about how do we network this. So we do a lot of shared groups, facilitating of networks, trying to bring it together; we have one large across NIHR public involvement group to try and think about some of the across NIHR strategic challenges. So it's a much more complex world and helping to shape public involvement against that picture is quite difficult and that's one of the things that we need to consider how to do it over the next 5 to 10 years.

But as I said, a lot of our work goes into this capacity and capability-building. In fact I would say probably about 60 or 70 percent of our time is spent on supporting both patients and public and research as in how to do this and it's a real mixture of churning out the same, in a sense, briefings and guidelines that need modernizing, need updating, are going to help people, but also finding some new innovations, new initiatives that meet currently.

So to give an example, because we were frequently coming up against, in lay review situations, inadequate budgeting for public involvement, we developed last year a cost calculator which is a budget tool, which whether you're an individual researcher or you're an organization, you can use to think about how you're going to - what money you need to put behind public involvement as an activity.

A lot continues to be around generating evidence, impact stories, case studies as part of our invoNET initiative that you have there which is also a network of researchers in public involvement, so building the evidence base for what we're doing. I think one of our significant challenges, not just in the UK but also here and around the world, is actually getting medical academic journals to actually relate, to tell the story around public involvement and delivering a piece of work better than they do currently.

And we do a lot around trying to - I've talked a lot about clinical research, but we cover all forms of research. Where I think we're weakest to some degree is around social care research and public health research. It amazes me that public health research, population-based studies, where you would have thought public involvement lends itself very well is probably one of weakest areas of all. I'm amazed at the attitude of some of funding organizations to public involvement and area, but we are trying to sort of build knowledge and momentum behind that too; all the things that you do which are webinars and other stuff.

And I think one of the things that you could argue is over the last 10 years, we spent a lot of time supporting patients and the public with materials. We've done less around supporting researchers, particularly young researchers who don't know how to do this.  So we are trying to correct that imbalance and that's one of our priorities over the next two to three years and we'll make sure that young researchers who are beginning their careers are getting a lot more support and help to know how to do public involvement, understand the value and understand some of the techniques and it's a bit of work, but I've started there from our mental health research network.

The third area is we do have an impact on policy decisions and quite significant impacts, so one of the big debates over in the UK over the last 18 months has been around transparency of data and clinical trials also. I'm sure you've had that here as well and that was very much prompted, ignited if you like by the - by Dr.Ben Goldacre and Ben Farmer. And there are many different ways you can come at this argument and ways in which it might be solved and there are many different features of - public involvement features of that, but I'm just going to choose one which is around the lay summary and the degree of easily accessible information that's being provided out there for public consumption; particularly in care settings where they might be taking a shared decision with their doctor, hopefully, about what their treatment or their intervention or their therapies are going to be.

So one of those is that NIHR has just started an online journals' library, so any piece of work that's done through NIHR by and large now has to be published openly on our NIHR journals' library and which was launched in June last year - June-July last year. And as part of that, we have a plain English summary which accompanies that. We are also asking authors to describe what the patient and public involvement component was and whether it's successful or whether it was not successful. I think someone earlier mentioned failure and failure is a very important part of how we learn, as you know, and also producing written lay summaries where you've got sort of feature-type articles for those papers that are really very significant and have a very wide public impact.

So in terms of our own shop - how we run our own business at NIHR, that's great and it wouldn't have happened I think if INVOLVE hadn't been there and hadn't been championing this.

The other side of the spectrum though is at the very beginning when people put in their applications, which I'm sure you've all seen this, is lay review. If you get the scientific summary, sometimes you get a lay summary; often the lay summary is very, very poor. That lay summary now appears on things like our own UK Clinical Trials Gateway or clinical information for people looking to be recruited for research or wanting to participate in research. So if it's not good quality, it's not helping patients and the public take that journey.

So again, what we've done and we've been commissioned by the government to do a piece of work to look at what constitutes a good lay summary and we came out with a report and recommendations which is on our website that came out October last year and now it's probably two or three months ago for it actually hitting the streets.

We will be requiring all people who come to us to be funded to produce an easily accessible, plain-language lay summary and they won't get their money unless it is produced. And that's a very strong direction to make to people and it gets us into some quite difficult territory and admittedly so, but it's important that people understand from the point at which they start the work, they have to be doing and writing and thinking in the way that the public might want to see their work.

So a few - I know I'm sort of running over a bit in terms of talk, but a few impact stories. So where we're seeing it have most effect on the ground, public involvement, the first one is around research prioritization; there's already been quite a lot of discussion around - about this this morning. Some of you may be familiar with the work by Sir Iain Chalmers and others from a few years ago which was a paper that he wrote in The Lancet with others around the mismatch between what patients and public regard as priorities for research and what's actually funded out there and you'll see it for yourself that this strong draw to other forms of research for you and I and yet most of the research establishment is focused on doing drug trials.

While that's morphed for NIHR as coherent program of work now called "Adding Value to Research" and it's about reducing waste; it's about making sure the priorities that we fund are more relevant to patients and the public, and it includes collaborations with others out there including The Lancet journal who are publishing a research series which was launched yesterday at a conference in London and there's the first of the papers which are about setting research priorities.

Involving the public is how you begin to close that strategic gap and that very important gap from a patient and public perspective. And we, for about eight or nine years now, have had an initiative running in the UK called the James Lind Priority Setting Partnership. So I don't know how many people know this, but I really highly recommend you go and find out more about it because it's really impactful. So very, very briefly, the - what we call PSPs for short, priority-setting partnerships, and its essence is a methodology for bringing together primarily clinicians and patients in a conditioned area. It might be - I think the first one was in asthma. This one's in Parkinson's; I'll talk about that in a minute - to come together and to identify over a process of survey work, questionnaires, workshops, come up with a top-10 list of the main treatment uncertainties in that condition.

This was the last one that was - well, actually, there's another being - one being launched in Christmas, but - and this one was launched by Parkinson's UK with the other Parkinson charity NIHR just before Christmas. So far 3,000 patients, public research as clinicians have taken part in this so far putting in their own thoughts about what are the main treatment uncertainties. There'd be a sort of exercise which is almost like a Delphi exercise of workshops and others to produce a top-10 list which will be out the middle of last year, so this is a consensus around this is what the research funding should go into and it's a very powerful statement and I know as a reviewer that some of this stuff is now being cited very strongly by researchers who are looking for funding.

The important point from a corporate standpoint, if you like, going back to some of the issues we talked about is this used to be a very sort of - it seemed to be quite a radical methodology that was funded by the MRC-NIHR which is out there and we've now brought it in-house, so it's now part of the way that NIHR thinks about what it's going to fund in the future. It's not to say that it takes precedence over any other discussion or debate or perspective - scientific perspective about what should be funded, but it's about getting a balanced perspective and a balanced portfolio and I think this sort of mechanism is something I think, which is robust, a robust methodology is something that's really important.

The second one is around improving quality and efficiency and thinking about our clinical research network, so you've talked about your own networks and the growth of those. We've had eight networks. I think we have currently everything from a prime - primary care research network to some condition-specific ones; stroke, cancer, and then a comprehensive network for everything else. They're national. They're about to go regional. That's another story we can talk about another time.

But anyway, this has been an area where there's been a huge amount of public involvement and real growth in terms of a public involvement community around being active around deciding what should be funded, how it should be funded, designing - helping to design the research, helping to recruit people, helping to get the information out there.

And I wanted to share this because it's a piece of work done through our mental health research network, so Bill you'll be interested in this. So they did a study last year. They looked at 345 research studies that had been funded through the mental health research network over the past four or five years; everything from clinical trials to other forms of studies, and then they looked at the association between public involvement and how effective that research was in recruiting people to time and to target is the colloquialism we use at home which is basically getting a trial up and running as quickly as possible and to time which is an important thing if you're running a trial that's worth millions or even hundreds of thousands of pounds.

So what they found in lay persons' terms is that if you have sort of copper-based public involvement - so a bit of public involvement is not particularly very sophisticated. It might be at the very beginning. There might be an advisory group. Then you see a marginal increase on whether it's effective at recruiting.

If you have very, very strong public involvement throughout the life - and it goes back to some of the things people have said - the life course of that trial or that research study, then you are more likely to hit your targets in terms of recruitment by four times, four times more likely to hit your time to target. So from a research point of view, from a funder point of view, that's a really compelling story. That says if you involve us, you are going to get this piece of work up quicker and you're going to deliver it better and you're going to know the answer to it better.

So I think the networks are a really powerful place where we both can make more effective research, but we can also help meet that bottom line which in this day of austerity is important. We have to recognize that.

So I just wanted to finish with a couple of final slides. So one is around I think relevance, reach, recruitment. I just thought you might be interested in some sort of facts and figures, but it gives me the opportunity to say that one of the things I'm really pleased to see in the SPOR mission, Jackie, the one that you put up at the beginning was a really clear commitment at the beginning to measure and evaluate what you're doing because I was saying to someone earlier, "If there is a mistake that we made at the beginning, it's that we did not make that commitment and we're finding it very, very difficult to put in place performance measures because there is so much debate." And I wish 10 years ago we'd said, "Let's just go for three or four really simple performance measures and let's work from there. Let's begin to build up our knowledge, our experts and their experience."

I think because we haven't done that, we were having real difficulty putting them in place. You find them being organization-specific or research-specific, but you don't have them as agreed measures across something now as complex as the NIHR. I think that's - you know, it's going to be really difficult. We will do it, but it's going to be difficult. So all credit to you for saying, you know, it's going to be there from the very beginning.

So a final thing which is around one of our - I think one of the big success stories and I think the future success stories for public involvement is going to be around what happens with young people and young - last year was a seminal year for us in terms of young people, in terms of public involvement.

We've seen a real strong sort of community - what I would call a research-active community of young people around public involvement grow in the last four or five years, a national group that are changing trial protocols. They're designing patient information. They're going to meetings with policy infrastructure.

There's Addenbrooke's Hospital which is a very famous hospital in Cambridge to the east of England. They even had a day of - a non-exec board meeting of children to come in and review their clinical trial units and their clinical trial organization. It's really beginning to seep into the culture and it was a seminal year. Last year they held their own conference. They designed it. They ran it. They delivered it. They've just sent me the report and I'm going to go and talk to the Chief Medical Officer in a few weeks about it and as a result of that, the Chief Medical Officer has made a commitment in her annual report that we will include young people in the design of clinical trials, whatever that trial is. It will just happen. It won't be a - there won't be any exceptions to the rule. We will do that. So it's an interesting example of how practice and policy are interchanging all the time.

And at that Generation R, which is posted to your right, Conference that was held at our Natural Science Museum, they did it in the format of a TV show and there was a lovely bit where a young woman stood up and gave a weather forecast for public involvement in the UK which, you know, we all know about the weather; don't we? But anyway, I thought, with great optimism, but also realism, she said, "The future of public involvement is full of sunny spells."

So I'm going to leave you with that optimistic, but realistic note. I hope you found it interesting and I look forward to having a dialogue with you over many years and good luck with the SPOR unit. Thank you.

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