Public & Patient Involvement & Engagement (PPIE) in Obesity Research

Description

Mr Ken Clare and Prof Louisa Ells (UK) defined the concept of public and patient involvement and engagement (PPIE) in obesity research and explored how PPIE enhances study design, relevance, and outcomes. ECN members gained insights into practical strategies and methods for incorporating PPIE into obesity research. Tips and suggestions for fostering meaningful collaboration and real-world examples of successful PPIE in obesity were discussed. More information here.

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Transcript

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I suggest we slowly get started. So, today's webinar is on understanding patient and public involvement in obesity research, featuring Mr. Ken Clare and Professor Louise Iles. Thank you all for joining.

I will briefly introduce myself. So, I'm Bram. I'm one of the Early Career Network board members of the EASO.

And today with me, I have Lisa Heggie and Niamh Arthurs. And Niamh will be posting links today in the chat and dealing with the chat and other technical issues. And then we have Lisa who will tell a little bit about future upcoming events.

So, Lisa, floor is yours. Go ahead and share what's coming up. Hi, everyone.

Thanks for joining today. I'll just take a second to go through some dates that would be of interest for ECN members to add to your calendar just before we get started today's webinar. So, the first upcoming event that EASO are holding to do with the Early Career Network is actually happening at the end of this month.

So, we have the EASO ECN Winter School, which is going to be held in Antalya in Turkey this year. So, thanks, everyone, for applying if you did apply. And I really look forward to seeing you there if you were accepted.

It's a really, really competitive process. There were only around 30 spaces for the residential winter school. So, if you didn't quite get a place this time, please don't be discouraged.

And please look out for the application to be open for next year. And please do resubmit. So, this year's winter school is going to cover hot topics in obesity and it's going to have perspectives from obesity management, public health, basic science, childhood obesity, and also patient perspective.

And we've got lectures and workshops and also delegate poster sessions. So, we're really excited. And as I said, please do keep an eye out for applications to open for next year's session.

The next event is the Nordic Obesity Meeting. And I just want to let you know that the late-breaking abstracts are open for application until the 10th of December. So, if you're interested in obesity, you're invited to come along.

It's not just people who are Nordic researchers. It is open to everyone. So, please, please do look at the application process there and consider whether you can attend.

We also have the EASO Novo Nordisk Foundation Awards. There are four different awards. And these are in the categories of basic science, clinical research, childhood obesity, and public health.

And these, each of the four awards come with a really large personal research grant of 300,000 Danish kroner. So, please do look into applying for this if you would like to be recognized for your work. And the application for that deadline is the 15th of December this year.

We also have the EASO ECN Best Thesis Award. So, if you have recently completed your PhD, please do consider applying for this. You can find more details on the EASO website.

And the deadline for this is the 14th of January. And another final gentle reminder, the abstract submission is open for ECO, the European Congress on Obesity 2024, which is going to be held in Venice this year. And the deadline is the same as the Best Thesis Award, and that's the 14th of January as well.

We are going to skip the, we are going to skip December for the webinar. So, this is the last webinar of this year, and we will rejoin in January. And I'll send a little note on the date for next year.

And it's going to be focused on career paths outside of academia that are related to obesity. So, please keep an eye out for the advertisements on that. One final thing, we also have established a new process to promote the research of early career researchers who are members of the network.

And we feature this in the bulletin of EASO. So, if you would like to have a look at that, we're going to share the link in the chat. And we have our first feature on Elvira Glebskaya, who we have promoted her research in this section of the newsletter.

That's it for me. I'll hand back to you, Bram, to introduce the session. Thanks for listening.

Thanks, Lisa. So, I just want to remind you of a couple of things. So, the webinar will be recorded and the recording will be available after the event.

So, the ECN is free to join and so are these webinars. So, if you have colleagues who might be interested in joining these, please tell them to become a member so they can join as well. So, for today, we have Mr. Ken Clare, who is the chair of the board of directors for the European Coalition for People Living with Obesity and is also the patient and public involvement lead at the Leeds Bagot University Obesity Institute.

And with him, he has Professor Louisa Els, who is a co-director of the Obesity Institute and is a special advisor to Public Health England. So, during this session, they will define the concept of patient and public involvement in obesity research and explore how it enhances study design relevance and outcomes. Floor is yours.

Thank you very much. I will just share my screen. There we go.

Can everyone see that okay? Yeah, I can see it. Super. It is a great privilege to come and speak to you this afternoon.

Around how best to undertake effective patient and public involvement and engagement because it's an area that's very, very close to my heart and a real area of interest for myself and Ken. So, it's really lovely to come and speak to you today. So, I thought I would start, if I can get my slides to move on.

There we go. I don't know how well this is going to work on Zoom, but I just wondered whether anyone will be prepared to shout out what you think your understanding of public and patient involvement and engagement is, what it is or maybe what it is not. I don't know whether anyone's willing to shout out.

If not, I will move on because I can't actually see any of you. So, basically, public and patient involvement and engagement is an essential part of the co-design process where members of the public or patients are actively involved in the research process. It's activities that recognise that people with a lived experience contribute additional expertise and provide invaluable novel insights.

It's fundamentally research that is being carried out with or by members of the public rather than about them or to them. It's really about creating a truly person-centred approach. It's about putting people at the heart of everything we do and it's about co-developing, co-delivering and co-evaluating services and research for the people that absolutely need them most.

So, and this is why. So, I just wanted to share this lovely video that EASO and ECPO produced because I think it just brings to a head why we need this approach. So, an average morning for me would be waking up in bed.

After lying overnight, I have aches and pains, especially in my lower back. The thought of having to get out of bed is a struggle. When I'm travelling with public transport to my work, I usually feel that I am judged.

At work, they don't know my name. They all know me only as the fat construction manager. People notice you and they stare.

Society, they're going to give stigma no matter what. If you're not looking like this perfect person as they see on Instagram, we not all look like each other. It's all day, every day and then you wake up the next morning and it starts again.

I love to cycle. I love swimming. My life is swimming.

I teach swimming. Painting. It's my new hobby and I paint like a six-year-old and draw like a six-year-old.

But I'm having so much fun doing it. I love it. I'd love to see people change their judgments to just take one second to pause before you speak.

People, if they were educated and understood what obesity was, perhaps maybe they wouldn't judge and shame people and they'd support them instead. Lives actually have an aligned language, one that's mutually respectful. It is a disease.

I have obesity. I'm not an obese person. So I just think that is a really lovely film and I just think it really nicely illustrates the power of the voice of lived experience.

So when we think about what the voice of lived experience and public and patient involvement actually brings, it's really important in bringing a new and a different perspective to the work you're doing, whether that be a service development or a research project. It can hugely improve the quality of your research or the service that you're developing. And it can make, really importantly, make the research or the service more relevant to the service end users.

So I just wondered whether any of you have actually undertaken any PPIE activity and whether you'd be willing to share your experience. Again, I don't know how easy this is going to be on Zoom. If not, we could perhaps have a chat about experiences at the end when we're reconvened at the end as a group.

But I thought it might be useful to share my kind of what really gets my goat about bad PPIE. I guess the first and foremost grudge I have is tokenism, when you see people doing really just the absolute bare minimum, just to tick a box. My second kind of gripe is not paying participants for their time.

As researchers, we're paid for our time and our PPIE members are just as critical as part of our team. So they absolutely should be paid to. And we recommend the NIHR payment rates of £25 an hour within the Institute and would certainly recommend that more widely also.

It's also really important you don't just think about payment for actual time, but also about out-of-pocket expenses too. So really important to think about things like travel, covering family care responsibilities, if there's any printing or phone calls or internet access that needs to be covered for it in order to enable people to participate. Communication is another bugbear of mine when it's undertaken poorly.

Our PPIE members are an essential part of our team. Therefore, good, open, respectful communication are really, really critical. And this importantly includes feeding back and also acknowledging collaborative input.

Too often, we hear people taking part in fantastic projects, their contribution has been absolutely invaluable, and yet that isn't fed back, that feedback loop isn't completed, which is absolutely critical. Another one of my bugbears is hierarchy. To me, absolutely everybody's voice is so important and it doesn't matter what role, what position or what background you come from.

Another area I'm really passionate about is around representation. Vitally important we ensure that our PPIE groups have the representation from all the populations we're trying to serve. And if we're truly going to tackle inequalities, we absolutely need to make sure we are undertaking our research co-development with the breadth of populations who we're hoping to target.

And my last bugbear is a lack of training. And this is training for both PPIE members, but also for the research teams. So it's absolutely fantastic that you're all here today.

So my PPIE essentials, I always reflect on the teamwork makes the dream work. And I think when it comes to public and patient engagement, that is absolutely critical. So my kind of top tips would be, please, please, please take the time to build good and mutually respectful relationships.

That's the foundation of any good PPIE work. Always ensure that appropriate funding is in place and available to pay for people's time and their out-of-pocket expenses, but importantly to pay promptly as well. Good open communication is fundamental.

So absolutely no hierarchy. And please do consider training for your researchers and your PPIE members that is tailored to need. You will find your public and patient engagement members will come from all kinds of backgrounds and bring a rich diversity of experience.

But that also means that their training needs will be very varied. So it's really important to chat to your members and to think about the tasks that are in hand and what training is needed to make sure everyone feels equipped to contribute as best as they possibly can. My other point is around evaluation.

Super important to evaluate your PPIE activity so you can celebrate what's worked well and really importantly, learn from what hasn't worked well. We are all human. We do make mistakes and what we don't want to do is make sure see those mistakes reinvented.

We want to make sure that we learn from them. And my last point is that we ensure that public and patient involvement and engagement occurs at every single stage of your research from the very conception of that research idea right the way through to the implementation and the dissemination of your findings, your research or your other service you're developing. It's always really important to also think about reach, to think about cultural awareness and to importantly consider weight stigma and bias.

Really important that you reach out to communities. Don't rely on them coming to you. Think about things such as community hubs or religious institutes.

Work alongside community champions or leaders or consider recruiting staff from target communities you're hoping to work with. Please don't rely on good literacy and by literacy I mean both health literacy and language literacy. Always use innovative communication and engagement.

So find out what works for your target population, what communication mechanisms are commonly used within that community and ensure your following suit. Always ensure you use non-stigmatising person-first language so that is people living with obesity, never an obese person. Unfortunately we know that weight stigma does exist within health and research settings and that negative attitudes towards individuals living with obesity have been reported by physiotherapists, doctors, nurses, dieticians, psychologists, medical students.

Research has even shown that even those who are involved and specialise in the treatment of obesity can also hold negative and misinformed attitudes. So it's really really important that you think about your own and also your wider team's weight bias and really important to remember that this can be both explicit but also importantly implicit bias. I would therefore encourage all of you if you haven't done before to undertake the implicit weight bias test that Harvard produced.

It's free to access and it's a really really good tool to really self-reflect on where your implicit bias actually stands. So within the Obesity Institute at Leeds Beckett the voice of lived experience is truly at the heart of absolutely everything we do. We have one very clear PPIE vision and that's to ensure that PPIE is integral to everything we do and that spans our research, our teaching and our knowledge exchange activity.

Our PPIE members are truly our partners and they really do reflect the breadth and diversity of the voice of the communities that we are serving. We work with people living with obesity or at risk of obesity from across our broad and diverse populations to ensure we are co-designing, shaping, co-producing all of the research that we undertake. We have a very core passionate ethos to demonstrate care, compassion, collaboration, equality and inclusion in everything we do with the person at the absolute centre.

We always use person-first language in all of our communications and we will continue to work to eliminate weight stigma and bias. So in order to help us achieve this vision we've been working with Ken and our partners at Obesity UK and the Association for the Study of Obesity to develop a national PPIE hub which is called Obesity Voices. Now this is the first centre of its kind within the UK so we really are breaking new ground and on a bit of a learning journey.

So it gives me great pleasure to pass you over to Ken who is going to introduce Obesity Voices to you and provide some further lived experience insights. So over to you Ken. Thank you Louisa and it was really good listening to you talk even though we work together and hearing once again, picking up new things in your presentation and I'd really like to thank everyone for inviting me along today and it's great to be amongst the Early Career Network and I know that some of you are travelling to Turkey and you meet some of my colleagues from ECPO and you'll be doing some work with them and I'm really blessed to be part of Obesity Voices in Leeds Becket.

About four years ago patient and public involvement in the UK was really just about 10 or 12 people who were always part of the same panels and I was one of them and there were always older people who'd retired and who were trying to give a bit back to the service but if you ask the same people all the time you'll always get the same answers and I think Louisa's vision for the Obesity Voices Network was to get a broad and diverse population and we did some recruitment and very quickly we got up to 200 people we've now got over 280 I think is the latest count and we are having a new recruitment phase in quarter one 2024 and we've really increased broad and diverse populations. We've also got people from around the UK and if you're not familiar with the UK it's we've got lots of people from England and not many people at all from Wales, Scotland and Northern Ireland and we're trying to build into that as well and we do have an aspiration for the future to expand to Europe so watch out for us because we're coming. Next slide please.

If you'd like to find out more about us there's a QR code there which I'll just leave on for a few moments and Niamh will probably put the URL into the chat as well. I feel really important telling everyone what to do this is it's always the sort of job I wanted. Next slide please.

So I'm going to talk a bit about me and my lived experience and I don't begin to represent represent the whole lived experience voice. It's a very diverse community but I've got I can tell you a bit about some of the things for me and I was at a support group last night in my home city of Liverpool and there was 13 of us and I think I could identify with many of the stories that people were telling of their sort of experience living with the BEAST team and I'm going to talk a bit about some of the good PPIE I've been involved in and some of the very bad. Next slide please.

So I mentioned the European Coalition for People Living with Obesity and that little tick with a leaf is called an Eric that's our logo apparently which I'm supposed to push. I work at Leeds Beckett University and I'm also Director of Operations at Obesity UK which is a member-led organisation about 30,000 strong supporting people living with or affected by obesity in the UK. Next slide please.

So within the institute patient and public involvement is integral to everything that's done and I think that was reflected when the first year of the institute I seemed to be at every committee and every working group and it was really good that we got that voice right in at the heart. We tried to reflect the communities that we serve and we were working across broad and diverse populations and I know it feels like we say that a lot but I think both Louisa and I realised that there were some groups that we weren't seeing represented and between Louisa from the institute and myself from Obesity UK we were awarded an NIHR grant to look at support groups across broad and diverse communities and we chose them to look at women from the lesbian community in Leeds and women from the South Asian Muslim women community in Bradford. Very key to what we do is about care, compassion, collaboration, equality and inclusion and I would say compassion is the most important to those because I think if you adopt that in everything you do you'll get it right and we were speaking yesterday to some physiotherapists and I was talking this morning to a group of people and I just think that people need to understand that compassionate care has got to be at the front of what people living with obesity need.

Every person living with obesity has horror stories of the way they've been treated and I'd say that you know the doctors have made them feel bad and then they've not come back for care so it's really important to have that compassion and Pearson First Language has already come up today and about communication and we will work to eliminate weight stigma and bias and people make mistakes and we help them and then we'll guide them in the right direction. Next slide please and these are just some of the building blocks of our institute PPI values and I'm not going to go through all of them you can the recording will be available and the powerpoint but it's about respect, support and that's really important support about making sure that PPIE members aren't left on their own about transparency about responsiveness and acting quickly both I've got a if I had a complaint I'd say sometimes researchers want everything done very quickly and we can't always deliver that and sometimes we need to support our members and your deadlines might not always be a PPIE members deadline and I'll give you an example of that in a bit fairness of opportunity and about accountability and I think that's really important to make sure that we hold out these values up to ourselves and be examined by them. Next slide please.

So I'm the lead for obesity voices in Leeds Becket and have a long experience 20 years in organisations for people living with obesity and I think now we call them advocates but I don't think you would call them I was a volunteer I set up a charity or not for profit is probably a term if you're from Europe for people to support people living with obesity in 2002. I work in obesity UK and my role in Europe is really important to me and it's really nice to see people from right across the ASO community and I was an ASO trustee I've done three terms which is long enough for anyone and I was able to retire this year and I was awarded an honorary fellowship at the meeting that was held in Belfast which I was deeply humbled by and if you get a chance to go to the 2024 meeting which I think is going to be in Oxford I think I really recommend that. Next slide please.

So just some pictures of me and the two children in I don't know what you call them they probably call them buggies nowadays but they weren't called buggies back in those days that was when I was seven months old and I'm the child with a hat on and I think I always put this up because my mum I was born probably less than five years after the end of rationing in the UK she was obsessed with having a well-fed child and I think that you know even from that early age I'm sure that what I was fed and the way I looked was important to me more than she you know every day there was a conversation around weight and food so I was seven months old and we were just moving out to a new house in the suburbs that day and the blue machine in the picture below that was a weighing machine that were often outside pharmacies or apothecaries in every branch in the UK and people would put a small coin in and you'd get an accurate weight and every Friday my mum on the way home from picking me up at school would jump on this machine and the number on that scale determined her happiness or misery for the rest of that week and about what we need and how she'd feel about whether my father and her had an argument that was just a battleground. I lost me and my brother and that's my family and and my mum had lost a lot of weight for that event and you know her weight she went up and down all the way throughout her life she was a yo-yo dieter she was on every sort of diet under the sun I dread to think of the money she must have spent on diets and slimming clubs and drugs both legal and illegal she took a sort of amphetamine like drug and she was very ill after that but she was never happy whatever weight she was and she was always struggling and I think looking at these four pictures it just reminds me that whatever the numbers are is actually secondary to something else and I think that that's really important to bear in mind. Next slide please.

So I became a nurse when I was 18 and I moved out and I went working in mental health and we had a very sort of powerful movement in the 1990s in the UK up until that time people with mental health problems have been in large institutions I worked in a what was called a county institution with two and a half thousand patients and they were closed there virtually overnight and we tried to make things better for patients and the way we found to make things better was to actually give the power to the patient and one of the phrases was we're not mad we're angry. I was a manager and helped the patients in the unit where I worked to set up a patient council and just gave them some space and they got made changes and later in my life I was diagnosed with bipolar disorder and I got early retirement from the NHS in about 2004 and I reflected last night I've not stopped working since. Next slide please.

So just some pictures about me sort of living with the beastie journey and that's a picture of my wife and I on our wedding day at the top and I lost a lot of weight and I only know it in stone so I won't say it, eight stone and I think like a lot of people living with the beastie I was good at losing weight, I was terrible at maintaining it. I put all that weight back on and another 10 kilos in a year and that was the picture of my life was up and down, kind of reflecting that that's what my mum was like and I was worried about my health and I put the picture of the timer I was about approaching 40 and not being worried about not living seeing my daughter, getting married and things like that. I decided to go for bariatric surgery and that's a picture of me the day after bariatric surgery in 2002.

I was 216 kilo and I lost a lot of weight in the first year so that's a picture of me the day before the operation in the blue shirt. Next slide please. So I'm going to tell you a bit about PPIE.

Next slide please. And that's Good, the Bad and the Ugly is a film starring Clint Eastwood I think it's called The Spaghetti Western and we were talking about them the other day. If anybody wants more information about that you can contact me.

So the first PPIE I did was when I retired from the NHS and it was a very large international multi-centre RCT bipolar study and they wanted me because I was a manager in the mental health service and I had bipolar so I ticked the boxes for them. They didn't tell me what RCT meant at any point which it would have been better if I'd known that. I was there and I thought that was a positive step and one researcher who still contacts me occasionally took an interest in me and told me what was going on but what was bad was they just wanted me there as a tame patient.

They never told me what I was there for. They used to give me autographs and data about what drugs did and didn't do and they never really cared if I didn't showed up so I just stopped going one day and nobody ever chased me. That was my and I never got any money for sitting in the room and I felt they were just abusing me really.

Next slide please. So then Harris was a study which was conducted by a PhD student who was looking at activity after bariatric surgery. Her name was Jenny James from Liverpool and she recruited a small group of people.

There were six of us and she actively chased us up once a month to see how we she told us what was going on. She made sure that we understood what she was doing. She still sends us a sort of note about once every six months and she's now graduated as a PhD.

She's working as a lecturer in university and she tells us about what the project's done because one of the things I've always found is PhD students are very interested in PPIE while they're recruiting people but then once they've got them you don't seem and done the work they don't tell them. We always had flexibility about meeting times and venues because I was at a meeting today and three PPIE members couldn't attend because they had jobs and the researchers were looking surprised at that because some of us do have jobs you know and you might have to meet PPIE people in the evening which I know is inconvenient but it's just as inconvenient as it is for us having to come to a daytime meeting. Jenny also we met in fire stations, libraries and a women's centre.

The other good thing was the swift payment. You know we may only get paid 25 pounds an hour for a PPIE engagement but if you're waiting for four hours to be paid that's 100 pounds it's a lot of money if you're on benefits or you haven't got a job and people in that situation can't manage cash flow. I think you need to be aware of that and we met with broader groups of people living with obesity as a result of this project so she was the very good.

Next slide please. So it's about a partnership for me and it's never just about money but it helps and if you haven't money's okay if you've got some but if you've got none it's terrible so I think you've got to make sure that people have got that through and nowadays what Jenny was able to give us cash it would be impossible I would say now from a big organisation but I don't see why it should take three months to get 25 pounds for someone and that sometimes it does. Sometimes PPIE members just want to be part of the library and the university or the big thing for some people is being having the name on the publication.

It was for me you know I went around showing all my friends that I got my name in them and when they read it they all started laughing but I think it's really important to understand what the currency is that people need and I think it's about understanding for me it's about understanding that what I did made a difference and I've got a sentence in the nice guidance on bariatric surgery that I'm very proud of because it's only there because I fought for it. Next slide please. So remission was where Louisa and I first came into each other's orbit I think I've still never she won't tell me who introduced me to her and I was involved about three months before day one of the project and one of the points I wanted to make from before another person another team bidding for the same grant I've been involved with Louisa's team for three months putting it together the the application and I was contacted at 12 30 on the last day of the application to ask would it be a co-applicant and you can't do that people can't make decisions based on that it's not right.

There's a in UK we have a thing called the RDS which are links of research design service they give you consultancy they can give you a small grant of 650 pounds which makes a difference in PPIE. We got a broad and diverse PPIE group the grant application process in UK for NIHR is awful for UKRI is awful and the things I've seen from the EU are just awful and you need to be a lawyer to understand and I you know I feel glad we've got Louisa to do it. We have regular PPIE meetings we've been involved in conference attendance we've got publications and we feel part of the team.

Next slide please and what I don't like this is a venue it's called the Liverpool Medical Institutes and these are guys on the wall the pictures are men who developed you know the royal college or something or developed circulation or invented great things and these are huge portraits about six foot high and in the lectures there's a I just go to pieces and it can trigger a thing called imposter syndrome and I keep thinking a big hand's going to come and take me out and if you don't want to get do PPIE to do well don't use words I can't understand don't use jargon encourage questions from your PPIE members and pay them well and make them feel valued. Next slide please and NICE which is the National Institute for Clinical Health Care Excellence and Social Care in the UK they have a really good system where everything's prepared they have people they have a whole team just to do PPIE before committees and make sure that everyone can read the materials that it's in a language they understand and they can ask questions and they have payment and that to me is a very good experience in the UK. Next slide please.

Frequent communication by size chunks a name person we use WhatsApp but you've just got to get the communication that works for you somebody uses slack I think it's awful driving mad. Next slide please. So be kind and considerate think things through don't make assumptions if you foster long-term relationships you'll get the best return and you'll enjoy them more you and you'll develop career-long relationships with people I think that's really important and if you don't know ask for help and we're both happy to take questions Thank you.

Thank you so much Luisa and Ken for your presentations and sharing more about the PPIE. Do we have some questions from the audience? Please you can raise your hand or the virtual hand so I can see you and give you the floor to ask a question. I've got a question sorry I can't find the hand to raise it but I'll go first just to get the ball rolling.

Thank you Luisa and Ken for amazing presentations. I wanted to ask just coming from the perspective of a student who doesn't often have a lot of expendable money to do with my research I know like you said it's so important that people who you have for PPI activities are paid for their contributions which is definitely right and fair. I was wondering what advice you could give to maybe students or early career people who as I said don't have much funding and how we can go about kind of raising funds to make sure people are paid for their contributions.

I think that's a great question Luisa. Ken do you want me to go first? Okay really really important and we grapple with exactly the same so our students tend to have kind of a small pot of money that sits alongside their studentship so that's sometimes available. Ken mentioned in the presentation in the UK we have the Research Design Service which I think is being renamed at the moment but that they provide a small pot of money for PPI activity although that does tend to be sort of leading on to it the development of a larger grant but also sort of going to your university or your individual school that you're based to ask is there a pot of money that can fund this because they are really quite small pots of money in the grand scheme of things and I think that's why it's really important that we work with our institutes to raise the profile, the awareness, the importance of good public and patient involvement and engagement at every single stage and level of research so we can get that buy in.

Ken have you got any other thoughts? I think you covered them Luisa and you know there are more there are PPI departments that aren't obesity specific and you know I came across one today in Manchester and they were more than willing to offer support and you know and I learned from them so thank you thanks. Niamh go ahead. Yeah thanks so much I have a question but I also just wanted to if I may share a bit of a reflection on something recently I was presenting at an obesity stigma event with marvellous members from the Irish coalition of people living with obesity and the event was in a beautiful prestigious national gallery so it's a fabulous building and so the event was on obesity stigma how to address it you know what are the barriers and how to address it and within the building there was this fabulous marble staircase up to the event room and there were no lifts and it was just quite ironic but also quite irritating that we were presenting on at an event on obesity stigma and the event location itself was creating barriers and you know I just think it's something that I think as anyone event whether it's organized an event or event organizers themselves really have to almost imagine walking through and seeing how you know are there what exists what barriers do exist and making sure that there's ways to address them to make a more inclusive society for everybody and the question I had is just I have the pleasure and privilege of working with children and teenagers and families affected by obesity both as a clinician and as a researcher and our group has really experienced that it's it can be really difficult to try and engage youth with obesity to participate in in work and research or whatever even when we even when we explain that it'll be completely anonymous and and their identity won't ever be used but I'd love to hear if there's any insights from Louisa, Ken or indeed anyone here of your experiences or you know of what barriers do exist for youth with obesity in participating and engaging because I know that many have said and we have a youth panel who have told us that many unfortunately because of stigmatizing and judgmental encounters and remarks they feel they have no voice or they feel that their voice isn't How do we as researchers or clinicians genuinely show that their voice and their input is so valuable and wanted? Ken, do you want to go first or do you want me to? Well I was reminded of the excellent work ECPO has done with young people and also the work Ella Hinton's done and I think she won a PPI award at Belfast didn't she and it is I think you know they are a group that we constantly flag up and you know we have several groups but I think we're a long way off what we should be doing with children and young people and we have got we have got some plans I think which I think Louisa could talk to about and what we're doing at Bingley's Beckett with James and Karen.

Yes so at the moment Obesity Voices is just an adult group but we would really very much like to expand it to children and young people as well but we've encountered exactly the same when we've gone out and spoken to various groups the stigma of being associated with something related to even though young people are really really keen to give their view so we're in the process of working with young people at the moment to develop how we might take that forward and the mechanisms we're using there's an established young people's group in Bristol that we're working with they're not specifically working on weight management or obesity but they're giving us some really good insights as to how we might develop that group and we've got another project that we're just about to start and we've actually developed our PPIE group with a most fantastic group of young people who we've actually recruited from one of our local weight management services so that was a really good way and we've worked with the service provider now we've done all sorts with regards to that so we're setting up an actual camp like residential camp to bring people together to have exercises so we can start to get to know each other and learn ways of working we've used really innovative methodologies so photo voice and sort of creative arts to engage young people and we've always made sure that there's a counsellor on hand because I'm always very mindful actually but that's one of the things I probably should have said in my presentation is always be mindful that people coming with lived experience sometimes the the topics you might be talking about the activities you might be undertaking can be extremely triggering so always please do think about whether that might be a possibility in ensuring there is a safety net you know whether that's somebody to speak to or some signposting afterwards just to make sure that you've considered and accounted for that so we have a very experienced counsellor who will be working alongside the young people who already has an existing relationship with them so yeah so we're very excited about starting that project it will start next year and hopefully we will learn a lot loads from that I mean the young people have been involved in the development of the application and have been amazing so yeah it's something I'm very keen and hopefully we can come back next year and tell you more about. Brilliant I'll keep stalking you so Louisa. All right so next we have Agnes please go ahead.

Hi I'm Agnes I'm from Institute of Metabolic Science in Cambridge. We are on the beginning of the journey to be to build PPR panel we had the first meeting with our department to see how we can do it and we managed to get very enthusiastic people we want to do it but we want to make it right. First of all I want to say thank you to both of you Ken your name was mentioned then you are national star I think one of our researchers Amy Arhen she worked for Epidemiology Unit she couldn't praise you enough and when I saw you talking today it was like wow that's the sign and we wanted to make it right and talking when you were talking I think a payment a swift payment is very important and universities financial system it's not the most friendly one do you know roughly how much time we need to put in front to make sure when we start we've got that in place? Months.

I don't know what you I mean we are still going through those conversations even now because also the other thing is you know different people you know would like different types of payment so we give some of our members vouchers other people when they have regular activity they can be on payroll but then there's different types of payroll they can be on and then I know colleagues in another team actually pay by providing gifts of food baskets and things so I think that's one of the early conversations to have with the members you're working with in terms of we want to pay you but what type of payment is best and also making sure that you support and signpost people to the impact of payment that can have you know if you're in receipt of benefits etc but yes I would allow several months of discussion with HR with payroll with procurement within the university to work out what are the different options and how can you quickly and effectively to effectively develop systems to process payments quickly we're getting there but I can't say that we're still completely there are we can. There is one woman in the University of East Anglia who seems to have some magic device she can do it in less than four weeks but I think I did a two-hour talk and they paid me on PPIA and it took me I had to go for an hour meeting with the HR and then it took nine weeks for the 50 pounds to come which that's not exactly encouraging no but yeah and you know I'm fortunate and I could manage but if you know cash flow is a bigger problem the less income you've got yeah right Marilyn go ahead so yeah I just wanted to share my experience and within my research while I was doing the trial of the PhD money is really difficult to find and when there is some it's never enough and researches are different kind and some are short term some are long term so it's also good to propose some alternatives of payment and I liked what Ken said about the currency we need to ask about the currency that people want to be paid with what I've found and I want everybody to consider it my research involved exercise for six months of people living with obesity so the service that I was already giving sharing to those people was a venue beautiful venue for exercise and a program for free yeah and which they will benefit from it but at the end with all the support and empathy and I don't know like I think my people are aware that it was very difficult to find people in this condition to commit with to a six month length exercise program and number was important to find I put on weight and I reached a BMI of 31 to participate myself just to assure some number of committed people through the process we came so close together I found out even those gatherings regardless of the program of the exercise the gatherings the group talk them having fun because the communication stayed on afterwards and everybody was in need to communicate and come together again and go out and have fun and maybe play a game and then I start adopting that in my consultancies of apart from the one-to-one individual consultancies that I do in physical activity nutrition and all the rest psychological support now I'm doing the group therapies the group weight management so it can be also this one can be also considered as a payment for for the people and everybody really is happy with it because as I said money is really difficult to to be found and some even they love the idea of contributing that payment it's not necessary if I feel important to contribute also can mention something about mentioning his name and thanking him for his his contribution yeah that was my experience and it led to me to adopt it even within my work thank you that's a great advice thank you for sharing your experience Marilyn so we we have we're over time now so unless okay you want one last thing you want to share or ask no sorry I just I was going to say to Marilyn thanks so much for sharing your experience but just to bring in that I think ethical considerations and you know different maybe different countries have different practices and and just from a clinician's point of view usually if if that was being seen that the intervention itself was going to be of benefit or was going to be seen as some form of reimbursement or value for the for the people participating but that there would always need to be I think from an ethical point of view certainly an alternative route that if the participants didn't engage or didn't want or it wasn't for them that there is some other kind of support because it is people's lives and their health and so I just think it's it's just important to mention the ethical aspects and but Louisa you might have or Ken you might have definitely I mean all all the the program was directed and managed by also two hospitals and clinics and a university so we all together and of course there were consents taken from everybody and everyone but I just wanted to highlight the joy that they went in because people living with obesity I don't know if everybody's aware sure they do have a life of loneliness they do avoid participating in public whatever event activity so when they discovered how it was they encouraged others to come forward and participate and we were trying to take all the measures for them. I think it's really lovely to hear sort of different experiences and how things work in different countries as well I guess one of the things I would just be mindful as well it's always to just make that very clear definition going back to that early slide I had around the difference between participating in research and participating in the public and patient involvement and engagement so that is really about the the co-design it's actually members coming into your research team and developing the research with you undertaking the research with you analyzing the results disseminating the results with you which is quite different to those they might help you develop recruitment plans but it's not about them taking part in the research it's about them helping you to develop the research so the research really does benefit that end user the target population the target community you're helping to work are you hoping to work with and it was nice to hear your results Marilyn I think some but not all people living with obesity feel that loneliness and isolation and but there is a magical atmosphere in any group with a common purpose I think and once you get that people together and yet that's explicit that can actually take on a powerful therapeutic force everyone so I think that's and we've got that in our support groups I don't think I could measure that in a way you scientists would be impressed with and but I think it is there so thank you thank you so much I will I will hereby close the session do please fill in our feedback form so you can tell us what you thought of this session I'm at least happy to have had you Louisa and Ken Plant has been seated so I'm very grateful you are here thank you so much and our next webinar will be on the 23rd of January so we'll have a little break and it will be about jobs related to obesity outside of academia thank you so much for joining everyone thank you thank you bye-bye have a nice evening

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