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Hello, everybody. If you're here for this session on public involvements, can I call you all to the front, please? And we'll we'll decide how we're going to move forward. So if everybody could come just moved to or something to bring up a fantastic thinking? Oh, yeah, I think we'll just are you. So I'm just going to start this sort of thumb workshop style and session. Bring your public involvement. I do a session. So just by way of introduction, while we'll do introductions that. But everybody knows these two wonderful ladies to my left because they did the session this morning talking about their royal is public contributors to research projects. And just to introduce myself, my name's Muktar on on a public in government leaned when NIH are So that's the national shoot of hoping caring search blended center called applied research collaboration. So I've been leading public and, um, patient involvement for five years. Now I have to call in camera. Thank you. So how is everybody that has everything in line is we really appreciate their paper britches and from online said, if you if your PSA probably questions that something's on in time he's had monitoring somebody is Caroline do? It's working, invested, burning in my support, our public and patient engagement. A lot of so I've been supporting shaky with a number of projects. But it was something with broadly, I'd broken some projects related to a women's health. And I also work with another group, which is Ah, today system is modeling. So mathematics and that kind of thing and how your players approaches to have problems. But I can't circle answer any questions. You might have one hopes that they support you. Encourage your store. Um, I don't know if you have never done it before. If you if you don't it to find out about the bone, mark the hip. They were doing a pastor about my life. I Hello. Thank you. Thanks, everyone. Yeah, You had me speak earlier on, um, Andi. Yeah, I think we haven't really prepared anything here, so I think the idea is just kind of have a bit of a conversation. Um, yeah. Oh, yes. Yes. So I I think I ruffled in here. Run. I won't buffalo now. So I like to, um, start with a little activity, actually, just to give you a gist of rock PPI work is all about so hypothetically, I have a bag of potatoes. So my wife has the bag of potatoes and she's going to go around on Give every single person of Toto and your task is to prepare a fish with that potato. Now you can prepare it in her native kind of you know how cultural Oh, you know would cook this potato and then you don't you do it on your room, you bring it back to the table. So I'm just going to have a quick ground. There's not many of us on difficult. Just shout out what you will cook with that potato or what you do that potato. You know what's up with? No way, uh, I make a spinal, which is Ah, we don't have anything. Regents? No. Okay, so I'll do like a lot of baked potato bake potato with cheese, like I just go around. So I'm doing something published called Platte Ski, which is, um, uh, ship the potatoes and you find that it's really healthy and you have those would like salmon cream on top. Gorgeous. I'm really enhancing. Have chips. Is that okay? I don't know. Wanted up. You don't. Oh, she won't. Cookie. What? You will make a dish. I'm really about it cooking, so I'm gonna have to go with six. Is that okay to portions of chips? Oh, go. Potato wedges. You shepherd's pie. Oh, nice. Make some self carry with curry. Yeah. Oh, Commander to have beans. Spoke about family birds. Uh, potato and borrowed beats. Thank you. Same group and I grew you much the potatoes on, then. Get on. Egg on sandwich. It's around. We have to watch. Is it like in the, You know, these are boiled egg. Out is potato. Okay? A gram. I think I run. I did. Some really knows on. Don't tell the worst. Please go and find it to get her off her screen and you'll get a price. Is she? Find it? Wow. Ashrams hash browns. I think our wash it off the dirt and then put it in an open. And when it's ready, that will be a big potato. Then I started like, a jacket for me. Okay. Uh, after cleaning, it's I may I brought it. So it'll be a potato in a jacket. Okay? Yeah, without feeling. I boil it. The weight is put it on your jacket. Tuxedos our boil it together with the chicken. Okay, I hope have covered it. Oh, my God. How could I forgive me? Give me Mash it up. You know, boil it, mash it up, and then have some minutes meet with muscle A like the most of one and then kebab. And then on top of it, the better potato choke because I'm lacking of time. That's mashed potatoes. Okay. Something else that you are low budget. Nobody. Thank you. Okay. I'm sorry, Mr, because I never, ever, ever short on time. I think it's gonna be a good uh, Now, there's a thing called al ago, which is French is like mashing. You put cheese and and it melts. That's very good. God, I got to be a hash brown. I did what you hear. No, came late. Sorry. I would have chips with some chili source with chili pepper. But, you know, I've been just I've been this activity minute owns another workshops, but this has to be the most boring just group ever with chips, mash and hash browns. Ansari. But something did, um come to my mind when that gentleman over this it she would hide date and let his Children find it, and he will give a price for it. That's thinking outside the box, because in other activities, people said they're going to make a dentist or out of it, a cut out a dinosaur out of it, other side that will make it stumps with it. Now I'm not so anything. Everybody's got their own opinions. That's exactly what I'm trying to put in town. Well, don't look like this and workers a group and get lots of light perspectives, great cultural perspectives in their experiencing, like life, experience, perspectives. You get all sorts of perspectives. So just imagine if this potato what's not to potato. But he was an issue, and I gave that issue, too. That's a problem on I give that problem to every single one of you. Every single one of you will have a different perspective to bring to the table, and that's what people I work is getting people to burn themselves their experience, then knowledge the expertise to the table because this is what this is, what it's all about. Research for public benefit what ever sort of research that we do, whether it's to find out what is the best road drink or the best holiday, it's full, the public and we'll phone. It is fair that the public get involved and this is PPI. I hope that helps. Thank you. Thanks here in my calendar, doing it. So if you work, I was just going to say so in my role in the role that Caroline does is we. We often work with researchers on public contributors to help, sure, the public contributors that are able to be part of the process. So I mean, now I know you go to groups, and it is sometimes hard for the public contributors, but also for the researchers. I never get it because you get all these really skilled clinician, put them in front of a group of patients and they just lose it completely. So it's part of my job to help facilitate it. But there are other reasons why we have doing this. Work it so that we can and sure that the public contributors receive compensation for both lateral in the UK Certainly, pain public contributors were on the value it's called of 25 lbs per hour for their involvement. We'll make sure we provide feedback. So when they have a discussion we provide, all these ideas will say you told the cysts and we can share this with you. I think so probably will report back. So when we write papers, we say we're both public contributors and knees of the ways we did it, something we've gotten You think, Oh, I've got something that's kind of just from recently in 2019, we've got some standards Republican development, and we can show the link with a week about it online. But the stomach is a really good way for us to think about. How are your public in government? I just show the six standards with that that they're not complicated. When this is rocket science. First, we'll increase of opportunities. Think about her involving to make sure that you're involving just so the people that are going to say the same thing because you have different perspectives. The second is working together, how we're gonna work equitably with everybody and make sure that people have a voice on that they feel that can contribution. How do you when you're gonna have the meeting is where we're going to have these meetings. All these things you can consider support, how we're going to support them. Do they need any training? They need to know what quality of research is a with a systematic reviewers or doing any training in hurting resume so supported learning. Then we have a governance in your project. How are public voice is represented A hormone levels. So if you've got to try and if you got something in the trial steering committee or the and you know the time management group, then we also have impact. What's the difference? The public contributors making. So making sure we capture that I have left one out, Carina, remember? Is I've got coming. No, I got that includes of opportunities. It'll come to me. But there were six standards on. So we have the standards is a fine. We're up to consider when I working together in place of opportunities, working together, support and learning capacity development. No, it's about a manner, uh, in pucks governments way. I was just, uh check. You don't come to me. Yes. I think what we will be really interesting reasons to get just a fuel for in the room is potentially really don't. So looking over went before. Um, and if you haven't been put the convenient have there been any batteries or anything that would put you off intentionally thinking about doing put the involvement? Um, so I'm not sure how best to share this, but it's not just Oh, sure, hands. Have we ever had a involved with the public research actually deliver dissemination doesn't accept your liver such a potential part in the research. That's a very important distinction. So it's not participation actually improving with the actual and we have such itself. So generally such Onda and, uh, alongside the mother of four. Then if that makes sense, sure has perhaps. Okay, that's that's great. So it's a little I might Can you put me on just osteo tell us a little bit about that? Yeah, Andrew Weeks, I I've done it. A couple. There's quite a few ways in which I've been involved in this. I guess the interesting ones were that way. Designed a device of postpartum hemorrhage treatment device, but it was a device to be placed intra vaginal E, which is clearly a sensitive issue. And I had a very good PPI grip who worked with us. Um, that the difficulty I was find with PPI is actually finding the right people because actually getting somebody who's ordinary person is quite tricky because many people who come in have got very much a perspective on it because they because they've been why why would you take your time to get involved in PPI? Work often is because you've you've had a bad experience or your I know your child has died of a particular rare disorder, and that's why you're doing it and finding people who ah, the ordinary members of the public is quite tricky. I exactly that's like when you buy put up on and you get the best way is grounds. Actually, that can can be a tricky thing, but I think probably is a difficult the way we can't, you know, present representative of everybody trying. But we can try the best so to try to make the groups of the work. With that spirit, I was just going to say I did some work with some pregnant women in two different areas of burning and burning. It was a really diverse place. And but quite often we do have they sometimes called, And I really don't like this time of the usual suspect. So people who do a lot of public involvement work. So what we did was we did some yoga pregnancy, yoga sessions on. We paid for the yoga teacher on. We did the trick for many diverse areas of burning home when they paid for the oak a sections I'm never completely freeing. But the thing was that at the end of the well, it was after, um before the session there was a chance to meet with a researcher and there were show session. So it was like Kharfen, our foot. Sometimes they bring 40 minutes on. The research can either bring the research problem to the group that they wanted to discuss, or they could share some of their research with them. On. It was splendid by the welcome trust engagement public engagement fund. I also because you're running out for the winter time. I had the project, but that was all well of getting rid of the virus is exactly right, but it was a lot of effort. It was a dose a day, a week, full time of setting up, going out there, doing a lot of enemies. But that was getting the real job public, the voice on the street. That was really good initiative. But unfortunately, sustainability is a real challenge. But for us, it was really good to hear lots of different, like, just out of point to that. And I actually wanted past it on, and they because one of the things that because we're putting a specific do have comestibles well, I might start with somebody who, you know, like my friends and something so much popular with you actually sharing and manage helping other patrons, I don't know. And so I think that's how we can start to bring in this, like, this is a different season, imagines rinses is actually getting Teo the Purple conditions not working. So the ones that actually good friends people. But I think oh, thanks for allowing. Yeah, I mean, I suppose I I felt that it's in a way, my responsibility to bring other people along. So even though I haven't interest in it, I you know I have I have a different view from other people. So some of the things that I've tried to do is, you know, make sure people get invited to things. Oh, if I get invited to something, I know I can't go, could maybe someone else might be interested in going, you know, um, you know, making sure that you know people are introduced. Or so I think we've been really lucky that when we've had opportunities were being able to ask other people as well that, you know, maybe they've never done anything to do with research before. But it's like, you know, and actually, maybe that might not being that easy for them to be poor of the research project, eh? So I know we had someone come to one of the sessions and she's just, um um she's had three kids. Just go, you know, a long time health condition. And she needs to kill you. And she just you know, I said, I want to be triggering And she came and it was amazing to hear her brothers and her experiences, I thought, Yeah, but those participants and I don't contribute. It's first to bend trust. Build that Ramoche in ship with them. It's very, very important toe build that relationship and concerned, uh, that trust. Yeah. And how did you do that? Through them To ones through workshops. You put them in and and you make that familiar, But even anything, you really have to make some valuable and make them the center of attention so that those feel vulnerable to add their perspective to your research or two ever toe whatever you're doing, it's it's much Didn't then the bucket and saying, You know, this is your bucket. You put anything on your liking to wait on, we're gonna work with that. Okay, Thank you. My name's patients from Uganda. I don't doing some work among transgender people. So I just want to know from your experience. At which point do you bring the public in? Is it when you're designing the study, is it when you're writing the grand? I really appreciate that information because I always want to do it, but I don't know the right time to bring in the public. Thank you. I mean, I think whenever you do, it is the right time. But I mean, ideally, as earlier, it's possible that some of the things I've worked on. We have literally hash things that help like, in fact, one of the ones over I recently on the applets in pregnancy. I literally badgered shaky look for changes. And again I organs the meeting and I come on shaking. Let's do something with all right people in the room on. We'll just rest that. What is it that we want to know from a different perspective? Some way we've got a research question, and we could designed, you know, the study. And it wasn't just me, because before other women as well into it a swell. But that was early on, just from just from the very beginning. When we're thinking about it, we want to do stuff in Katie's team. But we're coming, you know, like with the seeds of an idea. And then we talk about that. We just talked about it and into trying to still so, ideally, as early as possible. But any time it's the right time, just having a chat with, you know, just talking like you said, thinking about you know what we're doing? What matters? Yeah, I think what we're doing here is exactly what you need to be doing its networking because time it works to get the patients through network. To get the participants three minute works, the participants get the researchers so met. Working is also key. It's like the foundation, but obviously below that is trust on valuing women, all that stuff. But then bring your eyes. It's not working is key, definitely. Thank you so much. I think I've got some of that happening, But But please don't come from this new contracts acceptable. We're happy to answer questions and things, and I'm just gonna recommend what time does it said is that it's always the right time. And, you know, I really hate this idea that actually, you didn't start the design face. It didn't start a question you can't do. This is no involvement. That's just not helpful attitude. We want to sort of say, you know, sometimes we have to actually start working with him on engagement. Expect, and that can help us build the trucks It Then we can get that important things. So it's better to start that really those relationships now because then you know, in a few years time when you're going for next grant you a better position to actually say, Well, what's important to you? What's what is it? Moved here and you would hopefully identified ahead of time. What often in the funding world, you know, a fun like a grant comes along and we've got a really responsive to it. Actually, it's much better chance of we got a good way to discuss. Move. We've got We've got the side of my dear ready. We're still kind of specific questioning. Well, his mood changes. Whoever could scramble around the feeling of people, it says easier if you just stand up. Just one of the little quick one. Is that what when I first got involved? Yeah, I've got involved, like little when the research was already in place and happening on day. So one of the things was around troubleshooting. Yeah. So one of the things I said is, Well, they've got to cut because we have lots of slow. These here is like, So we've got to cut the service. What? So they should be cut? I noticed that. Well, I think this one is a pain. Like I was put the same thing on this. So when they had to cut best what they cut. And that's the trouble she's in. So it doesn't really matter. You can still have an impact of different points. Yeah, there. No, thank you. Thank you. It works so welcome to this session on public involvement. So just to do some very brief injections, and then we've got a short activity and everybody has to take part in it. So just to start, unlike doing a Republican government lead on my job's to person, it's a public involvement in a funded research center called apparently such collaboration. And on day, it's my job to work with the researchers under public contribute contributors. People like, you know, I have to make a contribution work, so that's more job everybody in horse. Everybody online is, well, money is counting. Get So I work at University thing as a patient with the engagement weeds. So it's a way of projects, a essentially ruined by medicine. So what with chicken and some of the projects, and also work with another unit, which, which is systems my marines, with this sort of competitions, visit 600 users techniques, But the apartment I have a questions, so that's kind of a little bit about me about that sort of a representative. Well, thank you for No, no, I, uh, you saw said, um, yeah. I mean, I think going to take us. So Yeah. So I said before I did a little bit earlier. One, but I went there for now. Let's just started for them a quick activity just to give you an example of what PPI work is and what we do and what it's all about. So, hypothetically, I have a bag of potatoes on. I'm not a good of a potato from that back to every single person in the stream on. I'd like you to bring back something made from that potato onto the table rather than just keeping it home and eating whatever. I want you to bring that whatever we make with that potato to the table. So if you could If we can just start with knowing, just go around. And if you could just shout out what you've been doing with that potato No. Okay. I'm gonna make a Spanish on it, which is up like five potatoes with with egg. I'm gonna stick some cocktails, sticks into it, turn into a hook. I'm gonna cut the show. A PSA? A stamp? Uh, president outlook. I don't make it simple. Big potatoes. I'm gonna make a shepherd's pie, Grayson. Opportunities. I'm gonna make chips. I'm sorry. Straight on inspiring, but I love I'm going to chop it fine. And make it a nice fried, uh, potato curry. I'm gonna make some Hassleback potatoes. I said I was going to say I would, uh, make some christmas. So I just want you to be aware of dishes to the table in the middle. And I will just take a step back and look at that table and say the beauty and the richness I've wrote that same bag of potatoes. Three ated because every single place and get their own idea their own perspective on Just look at that table. Help utilities. Some people have go mean. Some people have made stumps with that, some people have made Hitchings with the, you know, on the idea of alli endless, but the blue totals how they will talk definitely. And sometimes the movie, but but really sorry. My mind's gone blank. And I have this This is a condition that I have, so I'm going to pause the over to now. Why? That's why I Carolina he did a really nice evening, say, quite before we are replacing my job is a concussion taking using the standard. So for Republican government okay, which really useful free month. There's also another, um, thing like which which was the his accepts of guidance principles. Special. You thinking about doing engagement on developing countries? Trans states. But I think what we wanted to do is just get a sense of have my vote. Don't movement, right patient to the choir. Hey, well, maybe expecting. All right. And so we just wanted to know What have you done? Any patient Republican? Very and just really clear, but also patients with liver. But it's not for participating in our research. It's not one of the pills. The principle of such. It's actually working with designing research, to deliver the research, to evaluate sitting to us or disseminates. It s so just a show. Friends, really? If if you've ever in involved a public contributor in the research project, because if there's a few people kind of like one wave done, which is interesting, uh, could I could Okay, thanks I'll just tell us a lot of it. So I've been in golden various projects that they've been in road right from the time off when we planned it, when they had the idea even be involved. Mothers. We also have a project in the R. C. O. G called Oasis Ikebana on Right from the beginning, we have PPI involved. The message Mother's involved on they fed into the design of the city are left flits Um, what we're going to produce? For example, Venter's on how to open your protection. Work appears, were doesn't appear etcetera. Um, so if you're just focusing on research, that's one area. But I was the previous president of the international, your opinion association, and being got patients involved in every aspect of the developed an advisory board on they field into everything that we do now. We had a website, which Richard I mean the intention. Your organization deals with incontinence and prolapse, so this is a topic that women don't speak about. We had a patient read page for them, which had, ah, beautiful woman who had been a brushed, and the mother said they don't look like us on, said it was not appealing for them to go to it. So they have helped us change all of that. So I absolutely agree with you that I cannot emphasized the importance of involving patients that every step, that we are doing anything in medicine, thank you so much and not definitely sounds like a keep passing to chat about the past month. It's going through. Some of the stones are some other things that you might want to think about. You feel considering, you know, heavily encouraged anything. Consider doing movement and actually an actual required to you. So But, you know, you don't want that you've got to do and you've got to think about it. And actually, the sooner I get bored with it like, but that's what It's gonna be a little better. It's gonna have some research. So you so you have done it before. And this is partly why I'm in a job and researchers come to me and saying like that I've got it in both these patients on it. It's completely strange to me because I know all these conditions have dated a contact with patients, but when you sit them in a room with a group of patients and to talk about their research ideas. They just lose it completely. So that's why I'm in a job. I help make it happen. But what does good public involvement look like on we've been public involvement in the UK has been around for some, I don't know, 10, 15 years on in 2019, they developed a framework for thinking about what good public involvement would look like on your just six things on here. And I always say to people, It's not rocket science. So the first ones in place of opportunities well even involving are involving the right kind of people, and it sounds like a really dark question. But I once went to a group on bit was about something to do with maternity brain related research on there were six minutes or is this just got Dad's like, right now it's that room in there. Any women coming and it turns out, you know, eh? So making sure that you get a range of different words you don't want everybody cannot on table below chips. You want the quest. See what were you know, the hash browns, the hospital over different perspectives makes working together. How you gonna work with people? There's no point having meetings it to a corporate A Friday afternoon if it's prayers and I went to a lot of people that you know who would go to those committees or winning working when you're gonna meet way, how are you going to enable them to be removed? It's not going to provide 20. So that can have someone look after that. Can't. So that can actually come to moting, especially to think about communications. How you going to communicate with him? I was only took I did a crank today and someone said we've got real problem because one of the women working would have gotten access. So call me Madam Consent in the personal Oh, yeah, I can send you a post. So think about how we communicate when you come. Okay? With hurting updated on the project Will will be such a slow. So you have to keep them going. We're so collecting data. We've had so many several responses, that kind of thing. Think about impact. Hard to capture the difference. All those fantastic little public contribute smoking. How capture a little show that so we're both public contributes and this is the front so around, and especially people about stores that have governments like a trial. How about getting that public? Those are little trans standing commit you to trust in group. So where was the public voice ever? Level is 97. We will involve thumb when we want to involve them, but the decision will make the decisions you need to have a public boy said. Every level cause that's where is public money that's used to feel research, so they should absolutely have a saying. The decision thinking on We're also supporting learning how we're going to support them. You see what you think, this systematic review, the don't know what a systematic review is or, you know, should we have a cluster randomized controlled trial you might need to explain so that everybody can caution mean what the you know a bit about the research you need to, by training runs in and gotten is up a little in covered, so that's a supporting them throughout the investment Germany. So there's the standards, but us Colon says the years there have some great guy and see if It'll Global has book on the cab communities, so that's kind of I think that this point, we just weren't able to really to questions and kind of chip in and the I'm wondering a specific questions. Yeah, hold on. I'll get to, um, women who you can sell them rich when you're doing this kind of research, er, even develop any service. I'll give you an example. Who have they put a little public? A little service, which we're trying to develop in in crocheting Every now every Minnis on We'll have difficulty or deny area to get a minor table meant to say on this groups. And if you do get them, you get people who speak in good English educated to that extent or essentially socialized with the group of people who come to these kind of things. But you don't actually get to those, uh, people that you need to get to so other any tips and tricks. There I was just gonna say it's a little bit country. So have a beautiful an internist. But one thing I I did learn a man, is that we don't use the word seldom heard because it's often that they're seldom asked on eso. The problems represented groups for sure. It's an absolute challenge, because if I won't you know to find there are lots of people who will not going, look who opportunities. But we want to hear from everybody on. It's a case of going out into those communities, but the channels for us is that it's no. I don't think it's ethical to go to a community group. A similar come around again and never we need to build, develop relationships with communities on those communities are up, so you have to be able to trust on that's ever been is responsibility. So that's the research is that's the universities. That's the urge I voted senators. So, for example, in center, we invested with resource in developing relationships with community groups. But we're realistic. I can't. We have looks with 200 groups of a low, which is a small handful, and we have those really good relationships, and through that we hope that we're growing, but it's gonna hurt over. Started using Yes, I have kind of 10 points about it. I'm sure you'll say a bit more about increasing that you say about the health Literacy one. Yeah. Okay. So basically, I suppose for us within, Katie's team has been looking on the term from so wait have interests in what we do. So what kind of my child? Quite deeply. Eso, for example, women wouldn't have let you see one. Well, actually, Jonas, healthy words about that and how we reached the woman. I mean, I want to say something about in my HR. Okay, Yeah. So? So basically, we're going out to the communities we asked woman, but it wasn't the researchers. It wasn't the doctors. It was actually a woman like us that would go to a community, to our friends, to our family, and just spread the message like word of mouth. But in order to do that, you need to have tried like you said, trust and build relationships over a long period of time looking or someone If I'm If I don't, You know, you're putting your room to that person in giving them your trust. So you want to make sure that they're treated well. Um, with respects, I think finding that term commitment and kind of reaching, uh I think the other thing you might want to see if you know it was but from the injury chopper. Spect if this was something that I tried to have in our panel, that was really important. Because that home initial when you're developing the research question, before you even get to that it was building those relationships. And so in one week off three mornings I was talking about this and I'll tell you, it was very receptive and just kind of seemed to have a plane with NIH are on Boniva know it's gonna be launched at the end of July in so happy with work on a cool for program development grands. So there's gonna be money between 50 and 100 50,000 lbs just to develop partnerships. There's a whole family, um, parents this year. Half a million pounds next year and a half. Really, it's a rent 0.5 million over three years on. The planet is not around. Research is just about building these little term relationships with the community, people that have never done anything to do with research and to find that one of the problems on the ground so that we can think about what the questions and the research going forward. So I feel really proud that have been part of that. Really? Um, but yeah, I think that's about trusting a long term that that's a lot to do with matching out to those cramps that you want to work with well and then have, like, posters in their language on breaching out to GPS or depending on what your researches about is going rather than just If you want to get to housewives that benches twitter and things like that. You know you can't find a long twitter. You'll have to go to GPS will have to go to the schools that they send their Children to and and put up posters and not just English reason. You know, Post is you need to have it in their language, class of train. Whatever the target organ is, address there needs break down those barriers those communication barriers on, and then put these foot, uh, charges, chew them so that also I mentioned this before is making them for your valuable missing. Then they're perspectives valued rather than being like I'm the doctor. I'm this under my driving. Whatever you say, it's on the doctor But we went your perspective, going to hear what your background is, What's your experience? We're really excited and, you know, interested on. But it's a it's empowerment. And then that's how you that's how are we looking into PPI? And now I'm retiring. Other women and other women are empowering other women. So, um, now some of the women that I have, um, pretend to people they're actually facilitating workshops themselves. And it was just a matter of, you know, the communication, like like a member said, It's about communication, breaking down those barriers and making it inclusive to your target audience because obviously growing so limited with the sources and things like that. So target on address, over needs. Yeah, and I think kind of building on that as well. It's actually it's time and money as well. That's like a massive barrier here. Um, just because if you if you're doing research, make sure you cost a time and money for patient public environment because it's not cheap and these things you know, it's a little commitment. I mean, we for so many years we have done this on. Yeah, but you know, the immune you end up at a poker because we're paying child care, you know? So I think it's really important that whatever you're doing shouldn't cost it in, because it's so he said to cut that short. But I mostly the back give me because I Zocor. But we're very helpful to kind of answer questions of outside of this. But I work up online, and I know accession. So we're happy to go see an answer questions in August of an accession acceptable. But thank you very much for coming. Yeah, just like a wise point. Really? If you all thinking about doing a movement that next want, you want to know that you're involved with, You know, I don't think about questioning that money. And if you don't know how much to cost, come speak to sedate. You come speak to do it now because we have a garden. So, um, and of course, So I can't say so That you doing your okay? So I'm just gonna ask everybody just come out the beginning they be shine. That's it's almost great. It's not quite graveyard. Start the conference. I think we're saving the best of the end, So welcome, everybody to this session on patient on public involvement. Um, just allusive instructions. Very briefly. And then we'll get started. So I'm like, Go on. My weight is I'm a public involvement need. So it's my job to precipitate public involvement in an a national street of help. You can research pended center and we have a focus on apply. It has research, but actually within all center I we have a maternity thing. So I do work with a lot of pregnant women and partners and the families. I think thank you was everybody line. My name's Karen gets working investment banking, my patient Little bit of lightening judgments night by medicine across a couple of states in the center. And, yeah, sometimes works magic. Really serviceable researchers toe in bed, um, involvement into what they're doing. And Republican trouble says, and I'm Hi. Hello, young now one last time. But you probably heard me earlier among remember Katie saying I am yes, men and I spoke earlier a swell. And so we're going to quickly start off for the small activity just to give you a gist of what PPI is all about. So I've got a bag of potatoes, and I'm going to give everyone a potato. And I'd like you to create something with that potato, Um, but not keep it in your bag or whatever. I want you to bring whatever have made with that potato to the table. Hypothetic. You know, on. And I start off, actually. So with my potato, I'm going to contact the moon. I get a stump, I'm gonna make a Spanish omelet. So it's like fried potatoes with egg. Having a stick some cocktail sticks into It's turning into a hedgehog. I'm gonna get my vegetables left over from before. It makes some of the potatoes like a baby. Last week, I'm going to use cream, garlic and polymers on cheese. Slice a potato very thinly. Make potato dopama. I'm going to let my potato start to sprint and planted to my allotment. Get So next year, I think I'm going to draw my liver's. I'm really thinking, Oh, I love potatoes and we're definitely going to make um, Fry's out off chips was saying my own, um, I based potatoes and arrested. Oh, I love to share so plant my protective but then get along to share with others Yeah. Thank you so much. So we went to Diovan because she's running out of questions, and I feel that that is the frontal bit. So what I wanted to just start with just getting idea of of how many of you perhaps a little worked with a patient. I put a little of the public where research on dust. Basically, we work with the such with participated in such. So just taking part in this research with one of the things of points actually worked. Uh, a problem so deserved a liver check, cetera just a show of hands. A couple. So we'll test a little bit about it. You could. Really? Sure. And then after that prospect, Amanda, to give us some top tips on and take some questions, you want to tell us just a little bit about on both best. Whatever won't tell him along together was part of our global house into question on a little cross hatch of projects. Um, and we have a lot of any part from, um a little level is a charity is like a a person on the ground. And then also, um, her friend Brace, he was our translator. Um, Andi, they had a lot of input because they need their patient population. Really? Well, eh? So well designed our studies in the way that, um the question would be suitable to like the local culture, things like that. I guess they, like, helped us in type of our data is Well, basically I like better cultural understandings had checked. There are interpretations of what participants had said. I think that's a good example. Kind of touched on this side of acceptability on. And, you know, we're designing, like, well, such particular restaurant students awfully such as concomitant. And that's the one that's gonna check that it's acceptable, you know, from the coach will stand and just, you know, kind of a sufficient of the headaches. But, you know, sometimes those things which you might pick up a ticket for white Western researcher regulations. So with that, yes. So we've been doing a public involvement in UK for about well formally sort of collagen. We should involve patients in the public and processes for it. So it's better you for about 10 to 15 years on and 29 2 became it with NIH are, which is a key photos. Well, as other funders, people in your age and whales more than I love that Scotland they came out with a friend wrote, Help us consider what go to public involvement might look like. And I always say to people, It's not rocket science, they're just six. They're called standards for involvement. And these are things you should think about when you're involving people in research. So the first one is inclusive opportunities, making sure that you're involving people from the range of backgrounds. So you've not got an echo chamber of the same kind of people you want a different a range of perspectives. So think about moving on different versus the table. Next one is about working together about how we work with, um so we work in research environment on campus, at University of Burning, working out on a little five. Is that right? For the people who are in trouble of damage on a Saturday morning or Thursday evening was better on. Actually, if you're involved with people have got kids, do you need to provide care, of course, so they can have. They can put educating childcare and actually haven't moment to themselves. and be present in the room. So think about how you work with them. I have been doing okay. It's not everywhere but off on arrival. Public contributors so bad for that time. Probably 25 lbs prayer for Old Open. So think about those of working at them. I didn't bring a support, a learning that it's really important that people feel part of a project on want to do that? Sometimes I need to somebody they know that their contact any time about the project. But also how do we support them? If you're doing a systematic working, do they need to know before they start with a system after a few is in the process behind that? If it's quickest of research, they want to know about the question. But also for research is a refusing a particular techniques with the spoke support around. Communication is really important is really important that you think can consider with your public contributors hire her clean. The county with about the project does it. Is it muttering seven pills in the post? Get a phone call about the ways of keep in touch with the project is really important. Excess impact. How you don't capture the different ways public contributors market of folks to a project is we'll put more of that because we need to develop an evidence base with public unbearable off what works on what context. Final governance. It's really appropriate that public contributed reserved at a levels are all stages of the project. I'm that includes government's so particular for doing clinical trial or a trial. It's important you have public verses, our management. So try management group a little trans dermal committee. Or, if you're saying too about my senator, but where the symptoms alone will have the public versus there. So there's the six points of the frame that the case down. It's full of over but said, There's yourself guidance, which I also recommend. Let's place of fortune about how you do your public contributing to how you're going to public contributors. I'm just going way ask you this question to stop about what you're going to do with these potatoes. Just gonna hold over, find up, thank you very much. So going back to the potatoes again. Yes. So the point of the activity was just a showcase. What exactly PPI work is all about. So these potatoes were given to you from the same bag, the same batch. But it changed, according to this individual, that it was given to you. So if you were to imagine the potato to be an issue, say, for example, migraines on. I've said migraines. Can you tell me a bit about migraines? And I asked you that question. You will give your perspective on migraines when I go to the next person that will give their perspective on my greens. Someone would love a perspective with regards to the race or their culture. In my culture, when people have migraines, we do. We put up cold, whatever in their head, you know, on but somebody from a different country tonight so well, we just go for a swim, and that helps you know it's early, down to the individual. But when we put her these individual ideas and you bring it to the table, you just get a rich table of information on. That's what people say it's about. It's about getting go to the grassroots and getting very perspective for opinions there experiences and expertise in whatever that you're doing on working from that. So I just passed the over. I hope that's clarified the work and being activity of the potatoes because you're now right now, I don't know if anyone's got any other questions. Yeah, I was just wondering that I do understand that community involvement is very important in decision, makings and policy Formacion. But how about like because everyone has a different perspectives and there's so many perspective. So what is the common ground that you would set? So, um, Adelson work in global health research and we'll work with on a leprosy project. We work with leprosy Command. She's absolutely right. It's the same with public involvement. We called me every single perspective on. Actually, it does not have time to do that. Would be, you know, enough resource to do that. I tend not to talk about public representatives because really the only person you can really represent is that so. But it's coming back to that. You're close to opportunities and think about who involving I do the best that you can to try and get a range of different perspectives. So if you realized, let's say we've got project. We're looking for six months of kids from 0 2018 and you've got a group of moves. Never got five urology thinking We need to be with some different months. So opportunities to look at your group and discuss with a group of think lose perspective. Have you not go? And how come we're going to get those so I can listen to everybody is very sad, absolutely true. But what you can do is look at the group you've gotten. Think for us to need to include now coming up with consensus that's different on that's really hard, but we'll know sometimes about public involvement. It's just about reaching a decision together so the researchers might have perspectives. Public contributors might have this perspectives. The academics will have their own perspectives. It was about people together and having those discussions on open and honest discussions on the original shared decision. You're not going to get consensus all the time. You get people that still disagree, but it's about getting that balance. But thing that's a contradiction of those discussions in the first place, because for for many years it didn't happen. Sometimes it happens, but it's so it's quite token eStick so it's not sure actually do have a cell and have the decision is narrowed. I think I was gonna go. I just thought I'd given example. So one of the things we're working on is, um, women with multiple health conditions. So we're being very specific on him, a select to be on our panel. So I'm making sure that we've got a mix of women, some throughout the UK, of the different countries in the okay that we have women who live in over in areas in rural areas because they have different programs. So if you live in a rural area, you might have to travel in our like in with a scope. And somebody have to travel in our to go and see your wife. Yeah, And if you think one of those with the price petrol, you know, all kind of sort of issues might be very different in different locations. They're in our group. We've got 12 women, and we just tried to be specific about her being vitamins or we have a broad range of voices and the same thing with recipes. With your dinner graphic we just tried to be reading, and then more everyone agrees. That's true. But generally it's not a million miles your weight. Did you find that there's some kind of you kind of accept and kind of come to some kind of agreement? Disposes, I think a phone where I come, I thought, It's very I believe it's firm important to diversify you participants because it it just that's that, uh, dust that would have a lot of dust or whatever television, such because every race or every sort of different, you know, they bring something different on. It really does make you think sometimes when I can take off that maybe that might work because everybody's like, yet chips, you know? But somebody said they're gonna grow it and share it with at this. So no, everyone would be more like things like that. So it's important to have a diverse group off participants just to make you, um, information and data. Is it a bit more richer and more? But then I I do go back and say it's earned down to the type of research that you're doing so positive it'd now again, I think. Okay, we've got to wrap up now, but you're going to have any further questions. I think, uh, she clearly in a Republican under the weapon with the whole event, But we're probably sticking around for a little bit. So if you do you have any questions? Do you? Come on. But one thing I just wanted to say because we got a question earlier about, you know, when is the right time to start on doing patient involvement, Does it, you know is okay. I've already started my project at my turn rate, etcetera. Because I'm not. I'm not involved in that. The designer. You know, the question phase. I think the message when was it would be It's never too late to stop. And actually the PSA, we'll get started. It's miserable for the next project that we've got. So that's a really reports and such. Thank you for coming