.png)
Not Just Patients
Hello and welcome to Not Just Patients, a podcast where we break barriers to meaningful patient involvement in healthcare.
We’re your hosts, Caitlin Rich and Clarinda Cerejo. We’re both rare disease patients and qualified patient experts. And we are so much more.
Join us and our guests as we challenge patient stereotypes, highlight successful collaborations in healthcare, and share energizing tales of turning adversity into advocacy.
Not Just Patients
LIVE: National PPI Festival Launch at the Royal College of Surgeons in Ireland
Love to listen or prefer to watch? For the first time, the video recording of this episode is available on our YouTube channel: https://www.youtube.com/watch?v=ansbXaF9B6c
Join us for the first in-person recorded episode of Not Just Patients!
We were so excited to be invited to the launch of the National PPI Festival in Dublin, organised by the PPI Ignite Network and the Royal College of Surgeons in Ireland (RCSI). Listen (or watch!) as we speak with our 3 amazing guests about their experiences of patient and public involvement (PPI) in research, from their differing perspectives of an early career researcher, a patient contributor, and a research group leader.
Guest profiles:
Dr Viveka Guzman is a Research Associate at Imperial College London. She is also part of the Patients Experience Research Centre, where she promotes participatory approaches and supports patients and the public to get involved in research. Before her current role, Viveka completed her PhD at RCSI through the SPHeRE Programme, where she collaborated closely with an advisory panel of five public contributors across several stages of the project.
Clíodhna Ní Bhroin has a degree in Botany, an MSc in Biodiversity & Conservation and also requalified in IT. In 2017 she had a stroke that changed the course of her life. Wanting to share her experience to improve the experience of those who came after her, Clíodhna took part in PPI through RCSI, and in 2020 she was invited to take part in the Improving Pathways for Acute STroke And Rehabilitation or (iPASTAR) PhD programme as a Patient Champion.
Professor Fergal O’Brien is Professor of Bioengineering & Regenerative Medicine, Deputy Vice Chancellor for Research & Innovation, and Head of the Tissue Engineering Research Group (TERG) in RCSI. In his innovative research, he combines cutting-edge bioengineering with meaningful PPI. Fergal’s team partnered with the Research Ireland Advanced Materials and Bioengineering Research (AMBER) Centre and the Irish Rugby Football Union Charitable Trust to co-design a novel spinal cord injury implant alongside a PPI advisory group of clinicians, researchers, and individuals living with spinal cord injury. This advisory group offered valuable insights into the realities of spinal cord injuries and possible treatment strategies.
On this live episode of Not Just Patients, we explore PPI in practice and the transformational impact it can have on research itself and on all the people involved.
Chapters:
0:00 - Introductions
6:17 - Dr. Viveka Guzman: perspectives of an early career researcher
17:06 - Clíodhna Ní Bhroin: perspectives of a patient contributor
28:35 - Prof. Fergal O'Brien: perspectives of a research group and institutional leader
43:48 - Panel discussion
1:03:13 - Audience Q&A
1:11:19 - Advice for stakeholders looking to practice PPI better
1:15:02 - Summing it all up
Resources:
EUPATI - European Patients Academy on Therapeutic Innovation
Have feedback or suggestions for us? We'd love to hear from you!
Website: notjustpatients.com
LinkedIn: Not Just Patients
Email: info@notjustpatients.com
Hi, I'm Caitlin.
Clarinda:And I'm Clarinda.
Caitlin:And this is Not Just Patient.
Clarinda:A podcast where we break barriers to meaningful patient involvement in healthcare.
Caitlin:Thank you so much for joining our first ever live face-to-face recording of Not Just Patients. We usually do this over Zoom, halfway across the world from each other, with Clarinda in India and myself in the UK, with a guest who could be anywhere in the world. So this is very exciting to be standing so close to each other today and have people watching us. It's not nerve-wracking at all. So without further ado, just to introduce ourselves for those who haven't met us or don't know us yet, and a little bit about the podcast. So my name's Caitlin Rich, and I actually professionally work in healthcare communications. So I work with clients to build brands, educate audiences, and drive advocacy. When I got into this profession and this space, I learned a bit about patient engagement. And actually, it was something that I was surprised wasn't something that was more involved in this profession. So why would anyone make something for an end user, patients in the case of healthcare, without involving them? I was also particularly interested in this because I live with a rare disease myself. So I have cystic fibrosis, which is a rare disease that affects the lung and digestive system. And because of that, I also have diabetes. So it was something that I learned a lot more about professionally, but also try to understand how I could get involved in it from the perspective of a patient as well. So through learning about this, I found out about EUPATI. So for those of you who've not heard of EUPATI, it's the European Patient Academy for Therapeutic Innovation. I think that's right, it's quite the marvel. And their vision is to enhance patient involvement by providing information, education, and opportunities for collaboration for patients. So as part of that, they run a patient expert training where you can get qualified to be a patient engagement fellow or an expert. And actually, we completed that training in 2023. That's where Clarinda and I met. And now I will stop talking and hand over to Clarinda to introduce herself.
Clarinda:Hi everyone, I'm Clarinda Cerejo. I live in Mumbai and I've traveled all the way to be here today. I live with a rare disease called neuromyelitis optica spectrum disorder, and my professional background has been as a science communicator. My decision to become a patient advocate was the coming together of all my worlds. I'm a patient engagement professional, a EUPATI fellow, as Caitlin mentioned, and a trained design thinker. Apart from my work co-hosting, not just patients, I've been a consultant to the World Health Organization and I work with pharma and various healthcare professionals and healthcare companies to help them meet their patient engagement goals. And I serve as a PPI contributor to academic groups at the University College Cork and at the University of Aberdeen, and I'm a patient peer reviewer for the BMJ and Cochrane. Caitlin, do you want to tell them something about the podcast?
Caitlin:Thanks, Clarinda. So, yes, after we met in October 2023, Clarinda reached out to me and said, We've learned so much at the EUPATI Patient Expert Training, but I wanted to take it to the next level, get more people learning about PPI in a digestible format. And I was thinking about a podcast because it's a channel that's untapped so far and really easily accessible for all stakeholders. And I said, Sounds like a great idea. Good luck. And then she said, No, you have to do it with me. So following that, not just patience was born. So it took six months of planning, preparing, understanding exactly what we wanted to do, and come up with a name. So we landed on Not Just Patients. We love this name because it expresses the value that patients aren't just patients, they aren't just their disease, they are actual people as well with lives, families, aspirations, goals, careers, skills beyond just their lived experience. But the other reason we are called not just patients is because of the fact that we don't have just patients on our podcast. We get a range of stakeholders on our podcast to talk about patient involvement in healthcare. So not just the patients who are involved, but also doctors, pharma professionals, researchers, regulators, policymakers, publishers, and of course patients and patient advocates to understand how they can get patients involved in their work. We have many episodes because we release one a month since April 2024. So please do check out Not Just Patients. Lots of episodes are available, and it's available on all podcast streaming platforms. And that's my spiel.
Clarinda:So uh about today and what we're gonna do here. Uh, first of all, I cannot tell you how amazing it is for us to be here today and how much this means to us. When we started, we didn't have very big goals, we just wanted to get started and put something out one a month, even that was doing a lot for us because we both have full-time jobs, we live with our conditions, and just being able to do that was enough. But receiving this invitation from Niamh to speak at a national PPI festival, it just was surreal. And the fact that we're here today is incredible. So, um, on this very special live episode of Not Just Patients, we are gonna be bringing you some incredible case studies of PPI in action, and we have some brilliant guests with us today. Uh, we're gonna have Dr. Viveka Guzman talk to us from the perspective of an early career researcher. We're gonna have Clíodhna Ní Bhroin, excuse me, who's gonna be speaking as a patient contributor, and Professor Fergal O'Brien speaking from the perspective of a principal investigator and an institutional leader.
Caitlin:So without further ado, very excited to introduce our first guest, Dr. Viveka Guzman. Viveka is a research associate at Imperial College London, where she leads mixed method research exploring how social factors and places influence health. She is also part of the Patients Experience Research Centre, where she promotes participatory participatory approaches and supports patients and the public to get involved in research. Before her current role, Viveka completed her PhD at RCSI through the SPHERE programme, studying older people's experiences during the COVID-19 pandemic. To carry out key parts of this work, she collaborated closely with an advisory panel of five older people who contributed across several stages of the project. Welcome to Viveka. Please give her a round of applause. Thanks so much for joining us today, Viveka. Oh, thank you so much for the opportunity. I feel like Graham Norton. This is exciting. So, firstly, please could you tell us a little bit about your PhD research and how you brought the patient and public contributors into it?
Viveka:Yeah, of course. So the title of the project was Wellbeing Interventions and Support During the Epidemic. So the intention was to take COVID-19 as a case study and see what were the experiences of older people during public health emergencies and also to identify potential interventions that could be put in place at the community or at the place-based level. So the PhD had two kind of main components. The first one of them was a large qualitative, mostly interview-based study to try to unpeel the onion of the different layers that were influencing people's experiences in their mental, physical, and social health. And then the second component was a literature review to try to capture what interventions have been deployed during COVID in different contexts, and then to try to see what could potentially be implemented in Ireland as well. So the public contributors bit then, I think being a PhD, I wanted to do everything, but my supervisors were like, well, I'm you know, you have a limited time, you have limited funding. Uh it's better to do a few things but do them really well than try to spread yourself out too thin. So I had to kind of to reflect on if I wanted to do it in the literature component of it or the qualitative interview component. And I think I was more a lot more nervous about the qualitative bit because it was the first time that I was leading a qualitative component. I was nervous because I didn't have the experience of being an older person going through a crisis. So that kind of made me lean towards that option and involving them in that first component.
Clarinda:Right. So I guess my question is how normal was it for PPI or for a researcher or an early career researcher like you to have PPI as a component in research, in your institution, in among your peers? Were you one of the first? How receptive were the people around you to it? And what was different?
Viveka:Um, I think it was a little bit of a mixed bag. So I definitely did receive training for PPI. I was introduced, like I knew participatory approaches from before, but I was properly introduced to PPI during the PhD training. And I did that structure program that you referenced before, and they didn't, it wasn't mandatory to do PPI, but you had to include in your thesis plan if you were doing it, how you were doing it, and why at those stages, and if you weren't doing it, the same thing, why it wasn't the case. Um, and then it was kind of, I guess, a case of if it matched your project in known ways, or if it if it made sense, kind of, I guess, to a degree. And then I guess I was very lucky that one of my supervisors was a very active champion of PPI. So even though there was a little bit more unknown or skepticism in other of the supervisors, you know, we kind of paddled in together and say, but this makes a lot of sense. How are we gonna do this project if we don't have the public contributors at the table? Um, but at the same time, then so kind of I have some support from the program to do it, but at that time there wasn't a PPI ignite or RCSI at this university, so uh there were kind of maybe not many resources in place to support the journey.
Caitlin:And we we had heard that you embedded PPI even in the data analysis of your project, which is actually, I think, something quite unusual. I've not heard of that before. So could you tell us a little bit about how that worked in practice?
Viveka:Yeah, so um there were five people, as you mentioned, who were part of the public advisory panel. And when the first session that we had, we kind of set the expectations together. I kind of showed them all these graphs into ah, these are the activities that I want to do, and I kind of invited them to take part in as much as they wanted to. So they all were very interested in the study design. Unfortunately, now no one took off kind of the data collection, but then for the analysis, there were three public contributors who were interested in that side, and I think they have different motivations for that. I think one of them was very skeptical about uh qualitative research. He was like, How do you get from the interviews to the themes made no sense to him? Uh, and he wanted to be involved because of that. And maybe the case for the other public contributors was that they wanted to see if their own experiences resonated to the experiences of other people, and they really wanted to help me to make sense of a lot of data coming in. And because of how we did the recruitment, we knew that there was going to be a lot of diversity in what we captured. So we need to help me kind of disentangle those nets and highlight the things that they thought as well were important. Um, so yeah, then on the practical side of the analysis, that was a bit tough. Uh, again, I had a conversation with my supervisor and how to go about that. And uh she kind of recommended some articles, but the articles weren't very descriptive. They kind of said, like, yeah, we did co-analysis or we did training. And I was like, Yeah, but what is that? Like, what do I actually have to do? I wanted more like a cook recipe thing, and that wasn't kind of there. So uh Maria Perdle kind of recommended different researchers that had done analysis before, and she said, like, have conversations with them, uh, see what they can teach you, and then like just learn by doing it. Uh, and it was a bit tricky at the beginning because I think the first development of the training that I did was maybe very similar to what I received as a postgraduate student, and the contributors were like, uh, this is, I still don't know how I get from the coding to the theme. Uh, but we kind of walked through it together. We did kind of an exercise of me saying exactly what I was thinking of when I was doing the code, having discussions to see how other people came up with different codes and then how we merged those in different themes, and not to be so concerned, I guess, about the differences, but having discussions and reaching conclusions together.
Caitlin:Amazing. Great that the output as well as the research was kind of considered to ensure that that was impactful and kind of reflected what the PPI contributors were contributing to the research. So it's really great.
Clarinda:I actually have a follow-up uh here. So, as from a researcher perspective, for you, uh, when you had some of the PPI contributors want to contribute on the data analysis part, wouldn't you have felt that this is out of your scope? Or, I mean, why are you like what is what do you have to contribute at a data analysis level? I you've done what you needed to do, and how did you feel that you could benefit from them?
Viveka:Oh, I was delighted because uh I didn't have a lot of people to talk to about the research that were actually interested in the research itself. So that kind of magnified kind of the research team, the people who I could triangulate the ideas with. And of course I knew then the training was going to be something additional to do, but I kind of tried to think about it in like, okay, it's maybe good experience that I can put that in my civil, as I have done uh some training, I have done this communication skill, so trying to think uh it wasn't a waste of time, it was really kind of doing something that would benefit the research, but also have so many other types of benefit.
Clarinda:Um, yeah, that's really open-minded thinking.
Caitlin:Yeah, fantastic. And following all of that after your research, what was the impact of having those PPI contributors on your research in the end? What changes did they make and what value did they bring?
Viveka:Yeah, well, I think there were very tangible aspects of the research from the five PPI contributors because they came on early ish on. Like I had the research question, but there were so many opportunities to tailor the approaches. So if you see a comparison, for example, between the recruitment materials before and after, or kind of the interview guides before and after, you can see drastic changes on those. Um, and then I think there's also kind of more difficult to pinpoint more intangible benefits kind of that emerge in those discussions that we had. Like I changed my way of thinking about these experiences. Uh, and I think then in the longer term, it also had an effect on me that I don't think about kind of my target population or my focus population in isolation, but I actually think about kind of, okay, these people are older people, but they'll have so many roles and so many identities. There are so many things that are influencing those kind of impacts. And I have to think about all those things. So even though now I'm not focused specifically on older people, I carry kind of that intersectional approach. And maybe the seeds were there from before, but I don't know where I would be now in terms of that if I hadn't had my PPI contributors, which is hard to pinpoint, but it's a very important impact, I think.
Caitlin:Very cool. Yeah, it makes a lot of sense. Seeing seeing people as people because they're being so involved and you're having those conversations rather than maybe an intangible subject in a way. Fantastic.
Clarinda:Thank you, Viveka. That that was really insightful, and we'll have you back on stage for the panel discussion. Um, everyone, can you please give Viveka a big hand for now? Hi. All right, and with that, we'd love to welcome on stage our next guest, Clíodhna Ní Bhroin. Hi, Clíodhna, can you please join us on stage? Clíodhna has a degree in botany, an MSc in biodiversity and conservation, and also re-qualified in IT. In 2017, she had a stroke that changed the course of her life. Following rehabilitation, she returned to work just in time for the further disruption of 2020. Wanting to share her experience to improve the experience of those who came after her, Clíodhna took part in PPI through RCSI. In 2020, she was invited to take part in the Improving Pathways for Acute Stroke and Rehabilitation or IPASTAR PhD program as a patient champion. Work she is very proud to be a part of. Welcome, Clíodhna. It's so lovely to have you. Everyone, could we please give Clíodhna a big hand? It's really lovely to have you here. Um, could you start by telling us your story and how you came to be involved in PPI? Yep.
Clíodhna:So my story is not very long, but a little complicated. I have a stroke in 2017, and after that, I had a long road to recovery, which I'm still on now. Um that's why I have my little um invisible disabilities uh sunflower. Um, and I got involved in PPI uh from an open call by Francis uh Francis Horgan. Um there was a large meeting of people who had strokes in May 2019, and that ended up forming the basis of the PhD questions for the IPASTAR PhD candidates. So I became one of I was invited to be one of the champions, one of the patient champions, and that started sometime in 2020. I can't actually remember exactly when it started, but um, yeah, it was it was a hectic enough year considering so much time was spent at home.
Clarinda:Yeah, yeah. So can you tell us about the IPASTAR? Is that how it's pronounced? IPASTAR. The IPASTAR program.
Clíodhna:So there were four PhD candidates and five uh patient champions, and we were roughly allocated to one PhD scholar each. Um and I was working with uh Deirdre, and she was focusing on the pathway from the onset of stroke to getting to the doorway of a hospital. Um there's there there was lots of things discovered um through that process, uh, including the diagnosis of stroke, especially recognizing the signs of stroke. Um I didn't have the the typical presentation of uh the droop, the facial droop, but I had um right side weakness and I had speech difficulties. So I wasn't diagnosed for 16 hours. Um yeah, and then I had uh two two clots removed. Um I was lucky enough to get thrombectomy, uh got two clots removed in Beaumont Hospital, and um I was very keen that my experience, such as it was, would go on to contribute to the improved experience of people who came after me. Um we met oh in the beginning, we met monthly almost to really kind of build a relationship, get to know each other. Um they'd already done an amount of you know preparation and education because they were new PhD candidates and it um it grew really quite naturally after that, all online, obviously.
Caitlin:Yeah, of course, yeah. And what was your actual role then in that project? What did you do on, well, I guess a month-to-month basis is the question.
Clíodhna:Um I I was very keen to contribute and I had an awful lot of ideas. So um one of the uh a couple of the other patient champions were a little bit quieter, a little bit, you know, more relaxed about speaking out, but um I was not. Good. Um yeah as needed, right? Yes, uh I I do I do like to chat, and I we we well, we all contributed to co-design of uh surveys, and I don't know if co-design is exactly the strict right word, but um we contributed to uh lay people's summaries and to um how they were going to gather the information from uh patients who had experienced stroke.
Clarinda:Right, right. So I want to pick up on something that you said, which is that you had a lot to contribute, and I feel like a lot of patients don't feel like they have a lot to contribute, and that is what holds them back. Um is that something that you I mean did you have to overcome any inhibitions to feel to find your place in that group, or did you always feel like you belonged there? How did you arrive there, or did you did you just feel like you were part of that? Were you made to feel welcome?
Clíodhna:I was always made to feel welcome, and since May uh 2019, it was always a very collaborative, very uh encouraging atmosphere. Um I think it came from the top down from Francis and Olive and Jan. Um I think Hilo, I can't remember all of the others who were uh present, but it was all just they were keen for us to tell them what we wanted to share, and it felt very safe and like there was automatic trust. We did need to get to know each other because we were a group of strangers and we did need to, you know, establish the relationships and build trust, but it was done in a very sensitive way, and you know, we were careful that nobody wanted to overshare, but everybody wanted to do a good job. Um so yeah, it it felt it it really did feel quite natural.
Caitlin:Fantastic. And I guess you know, we've heard a few times over the last few days that some people use PPI maybe as a tick box exercise and have someone in the room, whereas when it's done really meaningfully, the PPI contributor really feels like they have an equal voice. And I guess being being brought into an area where there's professionals and you know, people who are in research and everything, how did they make you feel like you could contribute to that kind of thing and have that open space and that you were really listened to?
Clíodhna:It very much felt to me like we were experts in what we had experienced, and they were experts in the theory and the the learning part of it. So um it really was it it felt very equal. Um even our titles, like scholars and champions, like yeah, even that made it feel like we were a valued and essential part of the team, which uh it helped, it it was all part of it.
Clarinda:Yeah, definitely, yeah. Had you ever done work like this before, uh in any other capacity, or did you just arrive and get into this space where you felt so comfortable?
Clíodhna:Um, I suppose I'm kind of doing a bit of a disservice. After the stroke, I had lost an awful lot of my self-confidence. Um, I had also lost uh my speech and I needed to relearn how to walk and talk and read and write. And that's one of the reasons why I'm so passionate about effective communication, because um my energy is limited.
Clarinda:Yeah.
Clíodhna:And if I'm going to spend my time doing something, I want it to be profitable and beneficial. Um, so I have lost track of the question.
Clarinda:You could re-ask. I guess the question was if you if you had done anything in this sort of capacity, any work similar to this before, or was this completely a new arena for you that you just came in? And then you said that it was a journey because of your stroke.
Clíodhna:Yes, yeah. Um, I had done some science, I had originally qualified as a botanist, so I was familiar with the scientific method and I was familiar with you know evidence gathering and all of that, but I suppose I've always been a bit chatty and generally, you know, quietly confident. Um and the opportunity to work in IPASTAR had given me a new kind of confidence um in that my experience with the stroke was a valuable, worthwhile experience, even though it wasn't necessarily all pleasant.
Caitlin:Well, we're glad you're chatty and on our podcast. That's a really helpful characteristic to have. I guess just lastly wanted to talk about beyond that research project, then you've co-authored some papers and presented those research findings and spoken to PhD students. So just interested in what it was like to kind of disseminate your experience and how maybe you've seen that impacting researchers and helping them understand what it's like to work with PPI contributors and what value they can bring.
Clíodhna:I very much enjoyed that part of things again because I do enjoy communicating with people and I do enjoy, you know, people I I I enjoy, I'm also naturally very curious. So the idea that people could learn and like share and learning is just a very satisfying thing to see, and the idea that I could be part of that uh was it it was inspiring.
Caitlin:So amazing. Thank you so much, Clíodhna, for sharing that. Can we have a round of applause, please? Okay, and then delighted to invite up our third and final guest for today. So we've got Professor Fergal O'Brien joining us on the stage. Fergal is a professor of bioengineering and regenerative medicine, Deputy Vice-Chancellor for Research and Innovation, and head of the Tissue and Engineering Research Group in RCSI. In his innovative research, he combines cutting-edge bioengineering with meaningful PPI. Fergal's team has partnered with the Research Ireland Advanced Materials and Bioengineering Research Centre and the Irish Rugby Football Union Charitable Trust to co-design a novel spinal cord injury implant alongside a PPI advisory group made up of clinicians, researchers, and individuals living with spinal cord injury. The advisory group offered valuable insights into the realities of spinal cord injuries and possible treatment strategies. Through regular meetings and laboratory visits, they played a crucial role in guiding the project from its conception to the current publication, resulting in several separate papers on the importance of PPI in preclinical research. Thanks so much for joining us on stage today, Fergal. Round of applause, maybe, for Fergal. So, Fergal, we'd love to hear about your perspectives as the head of a research group. And firstly, how did your interest in PPI begin?
Fergal:Um well I I suppose I I was all sort of aware of of how research was moving and and and of patient voice. And I guess just you know, RCSI is an unusual institution in that we're a university of of health sciences. So in some ways the the patient is the end customer for everything we do, be that training doctors and healthcare professionals or carrying out research or whatever we do. So in the back of my mind, there was you know there was an awareness. But it was when we started the project on we had had a quite successful project in peripheral nerve injury. Um and we started to look about potentially scaling up some of the technologies we were we were using to develop peripheral, repair damaged peripheral nerves. Just for people who might be aware, they're the nerves that you find in your arms and your legs that come out from the spinal cord. Peripheral nerves can repair, but it's tricky. So we had some success in that, and we thought, you know, this is so showing promise. We we we licensed the technology to a company to bring it to the market to patients. And then we started thinking, you know, maybe there's an opportunity here for spinal cord injury. And we um were talking with the Irish Rugby Football Union Charitable Trust, and they're they're they're the the charitable wing of the IRFU who support rugby players who have had injuries, and they came to us with we we started to scope out the potential of a project, they were willing to put some money in. The Research Ireland Amber Centre was willing to put some funding in. And one of the things I had said to some of the leaders in the IRFU and in the trust was that we would be very willing to bring some of the people that they were supporting in the trust into the project. But I'll be honest, at the time we thought that might be kind of informal type thing. Maybe we'll meet some of the injured players, tell them what we're doing. And uh, somebody mentioned to me, I'd had some exposure to a project in our tissue engineering group that was led by Gary Duffy and Helena Kelly, and they had had uh Professor Michelle Flood involved in in doing PPI. So I reached out to Michelle, asked her, would she come in? Would she be interested in helping with us? And she began to bring structure, professionalism, organizational development to what we were trying to achieve, and really that's how it began to evolve from there from there.
Clarinda:Wow. Um so can you describe how the team was set up then and how you worked with uh the spinal cord injury group advisory group and to involve patients?
Fergal:Yeah. So spinal cord injury is is very complex. It's the holy grail of regenerative medicine. And one of the challenges is you know that every individual's injury is different. So depending on where in your spinal cord or the extent of the injury, everyone's lived experience is completely different because the extent of damage is completely different. So we we brought in a number of injured, three injured rugby players who became part of the panel. We also brought in in some some clinicians, um, John Quinnan, who's a um trauma and orthopedic surgeon, Emir Smith, very importantly, who's who's a rehabilitation physician, and she's working with people in rehabilitation post-spinal cord injury. And then, of course, it was the researchers. We suddenly had quite a big block of funding. Uh, over a couple of years, we took on, I think, seven PhD students, a research fellow and um uh um a postdoc. What happened was because we had got some seed funding from the IFU, we we applied for some more fellowship grants. So the team grew really quickly, and we had a really mixed interdisciplinary team of scientists, engineers, clinicians, psychologists, who I'll come to in a second, as well as the clinicians and the injured players that begin to form that. So at our very first meeting, the we sort of asked the players what what were they looking for? Because very conscious of their time and coming into RCSI, I think that was in January, it was dark, wet evening when they first came back in, and started to understand a little bit more about what their motivations were, and we began to think about you know, how will this begin to evolve then over time? And so the the formal structure is to meet, you know, twice a year, but it it's a lot of the informal contact that takes place behind the scenes one-to-one basis with some of the injured players. The players have come in to visit our labs, they've helped inform discussions. I think Kieran McCarthy, I think he was in here earlier. Kieran has become you know integral to RCSI in so many ways because he's contributing to PPI at an institutional level. He actually sat on the strategic advisory group when we were developing the university strategy, not the research strategy or PPI strategy. We had a number of PPI contributors who contributed at the university development of the strategy, and it's grown and developed then over time.
Clarinda:So, uh sorry, as a follow-up question, um, so speaking about some of the patient motivations in a condition like spinal cord injury, I imagine some severely disabled patients. Uh, I imagine some patients with um, you know, who are dealing with potentially mental health issues and are struggling to potentially get their lives together, you could say, uh, with their condition and everything. What would motivate patients like that? And how did you deal with that, with those motivations to get involved in research and balance all of that with their condition?
Fergal:I guess one of my early concerns was that we might end up, you know, generating unrealistic expectations that suddenly this therapy would be ready for transplantation to patients within the next four or five years or something, when in actual fact it's a long, long journey to come back that out. One of the most interesting things, we we we've used this quote a couple of times. When we start talking to the people living with spinal cord injury, I remember there was a quote from one of the players that went and said, Look, everyone thinks I want to walk again. Because walking again is the least of my problems, you know. I want to have better quality of life, I want to be able to make a cup of tea for myself, I want more independence. And that sort of shifted for us. That was a learning for us because it began to shift the expectation in terms of, you know, the researcher thinking they know what the person actually wants, when in actual fact we didn't have an understanding. Why did that become important? It became important because it began to direct, redirect the type of research we were doing. In spinal cord injury, there's no such thing as low-hanging fruit. But maybe where we started to focus on was, you know, the lower parts of the high branches to try and see if there are particular areas that we can focus on by looking at maybe areas for sensory recovery rather than focusing completely on motor and sensory recovery, maybe on restoring part of the spinal cord rather than thinking that we have to restore the complete thing. So that gave us a really big sort of shift in the research. Because we started to become, because of that, we became more focused. Because of that, I think the the research outputs became of higher quality because we were going, okay, this is where we're beginning to go, this is directing the research. And then what we were going to find was that every time we would have an update meeting, we would find ourselves being challenged, not just the PhD students, the PIs as well, too, in terms of, you know, you know, the players had had, they were taking note of what we were saying. So if we were saying that by May we expect to have this on as part of our preclinical development, and we've got an update meeting in June, uh, the questions were immediately what's happening with the data that you were supposed to have? And that was really good. And and from my perspective, I do a lot of work in innovation, commercialization, creating spin-out companies. And when you work with companies, companies have really strict expectations that if you've got a deliverable due on month six, you need to be targeting that. So that was actually comfortable for me because we were so used to working in an industrial setting, and it would not an industrial setting, but an industrial mindset to get stuff done, where and when we're going to get it done, except that we're being challenged this time not by the people who are paying for it, but the people with the lived experience. And again, I think that was part of what why the program research has maybe been of higher quality than we might have even anticipated at the start.
Caitlin:Yeah, absolutely, keeping you keeping you accountable and on track.
Clarinda:Yeah, absolutely.
Caitlin:And I I think just picking up on what everyone's been talking about over the last few days, and also what we hear in patient engagement a lot is about how bringing people in earlier is so important. And you've kind of outlined that there, whereby had you brought the PPI contributors in when you'd already decided the research priorities and it's already gone down that road, to change direction is well, it might not be possible, but it's also it would be very costly and a lot of investment, and you've lost everything that you've already done. So just highlighted, I guess, how impactful it is to bring those people in right at the beginning to make sure, even if you're that you're going in the right direction and not just sort of a tick box at the end when you've already done the research and you say, Does this look good to you?
Fergal:Yeah, and I'll give you an example, and maybe the Irish ecosystem is good for this. We've now, you know, PPI is come has become embedded in other research programs within our group. They had we were applying for a grant to help research board in the area of epidermal lysis, but also EB, which people know sometimes know as butterfly skin condition. And even before we submitted the grant, we had to go and plan the PPI component. We had to go and reach out to Deborah, who are the charity supporting that. We had to remember we had a had a version of a draft abstract or a lay abstract that we thought was a lay abstract, but that actually had had PPI contributors saying that isn't lay abstract. This is what lay abstract should be. So you're absolutely right. To do it properly and for the research and science to benefit properly, you need PPI contributors there at the beginning, because otherwise it becomes the didactic. The researchers are going to tell you after three years, here's what we did, type of stuff, rather than it being a two-way interaction. And I think something else I learned, for example, and I um I I love your not just patients name for the podcast. I think that's brilliant. Kieran's always said to me and said to us, because listen, I don't see myself as you know a patient contributor here. I see myself as a collaborator, and that is, in essence, exactly what he and the other contributors have been from the the outside of it. And in terms of the next generation of training, and you look at how it influences researchers, the we um we now have another generation of PhD students. All seven of those PhD students have now graduated, a couple of them have stayed on in the group. The next generation are now moving back into that way of thinking. But the quality of their PhDs and their quality of their communication skills, we've won a ton of prizes at conferences and stuff like that. But that's because not just because they had good data that was statistically significant, it was because the researchers became much better communicators as a result of their engagement with RT.
Clarinda:Right, right. Amazing. I think um RCSI is you you've seen the transition from not maybe not involving patients as much to the way that it does now at a very holistic level. And I guess my question is how have you seen a culture shift, or how have you seen that culture shift amongst your students and staff? And how what what how does that make you feel?
Fergal:And how well I I can give you an example just from this week. Um an utterly brilliant PhD student, Kean O'Connor, who who's a postdoc, is working on the project at the moment, and he's been he's been in Harvard for six months, so he's beginning to work in a different area in spinal muscular dystrophy on a collaborative project. But he's been writing a grant application. And when he sent me to an international funding agency, when he sent me, he'd be here today, except he's had a tragedy in his family, very sadly this week. Um, but when I read the draft of the grant application, there was all the bit about the cells growing on the materials and how we were going to alter the materials. But he had an entire work package on PPI for what would be a typical uh biomedical sciences type thing. And I'm looking at this going, that's an example of the culture shift where this brilliant researcher who has been trained in it, when he goes to try and write his own independent grant to transition from being a postdoc to an independent PI, it's a fundamental piece of the application. And I know rightly, because I've been I've sat on these international grant panels, when you see something that sticks out differently, you're not normally seeing PPI, that's going to enhance the quality of the application. It enhances the quality of the research as we know. But if you're a grant reviewer who doesn't normally see this kind of thing, it's likely to make a greater impact. So I would be very confident that that grant, if it doesn't get funded in the first cycle, will likely get funded in the second cycle. But I think it's an example of how his training from the outset has seen that he sees that as part of this is how we do research, you know?
Clarinda:Yeah, amazing. Yeah. So excellent. Thank you so much, Fergal. It's been so wonderful to hear from you. Can we please have a big round of applause for Fergal? And with that, can we please have Clíodhna and Viveka back on stage for our panel discussion? So uh we've heard from all three of you uh from different perspectives about uh the value of PPI, and to some extent, so maybe you can talk a little bit more about as an early career researcher, Viveka, what would you say is the value? Well, we've heard about the value of it in your research, but what would you say from an early career perspective in general is the value of PPI? Well, definitely better research.
Viveka:But since you said other than that, I can think like the communication skills have definitely improved. I think if you can have conversations about your research with patients and public contributors, then that makes it much easier when you need to have conversations with funders or with people from different disciplines or with your granny in the Christmas dinner. You know, like so many aspects of the communication are key. And then I think there's a lot of transferable skills as well, and how you manage those different meetings, how you kind of share the decision power with other people. And that's very important in academia as well as it will be in other careers that you might decide to pursue in the future. And I think it also, as an early career researcher, makes the impact of your work a lot more tangible. And it's something that it might depend what type of research you are doing. But if you are not necessarily in contact with the patients or the public in that research per se, then your mind need not be so aware of what that impact is. And having the public contributors and the patients at the table make that a lot more evident. And I see as an early career researcher, that's super important, really will shape because you're kind of just formulating your your ideas, and that kind of will shape how you go on forwards with that.
Clarinda:Yeah. And Fergal, maybe would you like to respond uh in terms of how you teach this to early career researchers who are just coming in?
Fergal:Yeah, I I'll go back to the communication piece because one of the learnings for for all of us on the team and when we were involved with PPI is that you know, I work as I'm I'm a biomedical engineer. As by its nature, it's a very interdisciplinary field. So if you're usually when we're talking, there's people that don't, that there's biological biologists who won't know the engineering, or there's clinicians who won't know the biology, or vice versa. So you have to try and be able to explain complex concepts clearly. That's where the real benefit has been right from the start is looking at these researchers. If they don't, you know, in my in in that have been involved in our projects, they may not stay in research, they may go into industry, they may go into scientific writing, they may go into completely different fields, they may go into clinical medicine. But apart from the research piece of it, you know, their ability to communicate and in their careers, they're likely to go further than they might have done if they hadn't been involved in the project. And I think that's a massive, massive benefit on this.
Caitlin:I guess Clíodhna, from the perspective of a PPI contributor, what was the value? The value's really clear, I think, in terms of how PPI contributors contribute to the research, make it more valuable. But as someone involved in it, what value do you think it brought to yourself and the other patient champions in the research project?
Clíodhna:I didn't realise how much value it was going to bring to me as a person. Um, I thought I was going to be contributing to you know further stroke care. Um I didn't realize that I was going to be using my professional skills from um software development and uh trying to explain how uh uh website accessibility was important and the different ways that website accessibility could be improved. So I was able to highlight it to the PhD scholars and they took it away and they were able to improve the IPASTAR website um so that it was more accessible. Um and that's something that I was working on uh in the process of my return to work, um, which is neither here nor there. Um but funny enough, the only time I felt insecure about my abilities to contribute was during my return to work process. It it was never to do with the IPASTAR experience or PPI because they had made it feel so so welcoming and so valued.
Caitlin:That's amazing and speaks to what Fergal was saying before and what we were saying about not just patience, it's bringing so much more than just your lived experience to the to the role. And I think it's amazing that it got you to practice those skills again and contribute so much more than just that lived experience piece. And actually, you've almost started to answer one of the next questions we had was we've been talking about how great and how valuable it is, but obviously we know that PPI isn't happening meaningfully everywhere in Ireland. It appears to be happening extremely well, and it's a well-oiled machine. But what are those barriers to ensuring that PPI really is embedded? And actually, maybe Cleaner, we could start with you about how you've felt in terms of, you know, you said it was very easy to get involved, but do you think from a patient or public perspective or a caregiver, what are those key barriers to getting involved?
Clíodhna:I mean, the first would be different kinds of access. So we had an awful lot of reading material. Uh for me, processing reading material is slower. So I prefer to use voice to text, uh, sorry, text-to-speech, and um I would follow along with the with the writing. Um we ended up using voice notes to communicate, and there were uh QR codes for some of the surveys and some of the information pieces so that people could access the information in multiple ways because information processing can change after a stroke. So even accessing the literal information that you want to participate in PPI and you don't know how, um, having a range of choices uh would improve things, and I suppose that mirrors some of the contributions from yesterday, where communication differences really are important and people have much value.
Clarinda:Yeah. And um I mean to continue on what you were saying, I think I would imagine that balancing living with a condition and time and uh work in this space would also be a huge challenge for PPI contributors. The fact that payment is, I mean, that came up in so many of our sessions as well. I think uh yeah. Uh Fogel, what would you say um are some of the barriers at an institutional level to embedding PPI?
Fergal:PPI is quite well embedded in the institution now. Although one thing that should be said is often it's more firmly embedded at the clinical research side. The interesting thing about the project that we started was that it was preclinical research, and that meant that the contributors weren't going to see a change in therapy or a change in prescribing. You know, they knew that this was going to be something that's going to take longer time before it begins to make that direct impact. But when we looked at that, we realized there actually had been very little PPI analysis done at a preclinical level. So one of the PhD students, the seven that I mentioned, was a psychologist who got his P his PhD on the process of PPI at pre-clinical level. That's been really, really informing. And um uh, you know, in fact, those papers, a number of papers that have been incredibly well cited already because they're having an impact. And we talk about going beyond Ireland. How do you have a shift in terms of PPI internationally? Well, these are being published, they're being read by other groups, they're being read by other groups, so that helps to grow that. We also saw on the on the growth of it what it started off as a project sponsored by the IRFU. Um, the other rugby unions around the world got a hint of it because it was being presented by World Rugby as a case study and where we've got injured rugby players involved in state-of-the-art research. So we had a meeting in in Twickenham in London where we had representatives from from the RFU, from New Zealand, South Africa, France, Argentina, all the different rugby unions began to look up and say, could we start embedding this kind of research into our programs internationally as well? Now that's moving. So you I think you may see in sport that rugby may end up ahead of the game in terms of thinking about injuries and research in in this space. But I I do think the publication element is important because I think the the papers that Porek produces as part of his PhD, I think they're the kind of things that are likely to start to grow that type of impact, and that we need to make sure that while we want the research to have a benefit immediately to patients, to grow PPI, I think more internationally publications, international journals, the science of the process are as likely to have a more global impact in terms of growing it into other countries.
Caitlin:Yeah, yeah, that's amazing. And you know, I think almost you you might become a certain echo chamber where you know you have this fantastic PPI network here, and everyone in this room is really invested in PPI, but it's how do you go to that next level beyond to start reaching those people who have not heard of PPI or don't know how to do it and aren't invested in that way? So some of those things that you just mentioned would be really valuable in terms of outreach to other centres and other countries and making it something that's globally more relevant in research. I wondered maybe a question for Viveka. On that kind of note, do you know about any, and maybe this could come from your own experience or what you've heard speaking to people about PPI, but about any sort of common misconceptions that researchers might have about embedding PPI into their research?
Viveka:Yeah, I think among researchers, some a common misconception is that PPI is always more time consuming than the optional non-PPI. And like I think that it's there's some truth to it that if you want to do a good PPI, that will take time. But that doesn't mean that if you compare within a project with PPI and one without PPI, that you're saving time by not doing PPI because you might actually go down a rabbit hole and develop a medication or a treatment that's actually not gonna, no one's gonna use it, people are not gonna take it. So in that way, PPI can actually be time-saving. And then again, if I take the example from my PhD, that's what's happened with that analysis, where actually having the people on board make it a lot more efficient and the results better. So um, and then on the side of the the contributors, I think is maybe that they would feel that they are lacking scientific knowledge, but then I think that that is not the expectation. That is not what we they are bringing to the table. Actually, what we're valuing is that lived experience, that is what researchers can't learn that from the text or from reading academic papers. Um, so they're ready to go once they have the lived experience.
Fergal:And can I just just follow up just another example on the on the where it can benefit the research and the science? We part of the work that we were doing involved developing um materials, implants that can carry electrical stimulus as well as being retained within the body. But some of our contributors were starting to talk about epidural stimulation and how what did we think about epidural stimulation in terms of the clinical treatment for spinal cord injury? Now, the actual fact was we didn't really know that much about it. Umer, our rehabilitation physician, had seen it, but it was very much at an experimental stage. So it was a new clinical regimen, or you know, at an experimental approach that was brought to us by the contributors, but it began to really cause us to start shifting a lot of our research towards the electroactive material piece. And scientifically and experimentally, that's probably where the biggest impact from the research has been to date because I and I'm thinking five years down the line now, but I can see a case where some of the materials that we've developed will be used in conjunction with epidural stimulation, which is a little bit hit and hope, in order to come up with more targeted treatments. But that concepts were brought to us by our contributors. And I don't think what we're looking for is the scientific expertise from our contributors. What we're looking for, I I guess one learning for me was how informed their contributors were in terms of reading the literature, keeping on top of it, looking at, and you know, we work with stem cells, and there's a lot of bogus science, let's call it, where stem cell treatments are, and there's some good work being done back out there. But some of the questions were what how do you figure out what's real, what's good, what's good science? But all of our contributors were very much on top of because they were reading about all this kind of thing, and it caused us to look to shift and to think more about what are other groups doing as well, too, you know. But it it's it's it's been of value to our research direction from that perspective.
Clarinda:Right, right. Um, I think I'll just ask you uh to put on like some forward-thinking glasses and uh tell us what you see as the biggest opportunities to for people that could potentially transform PPI for research in the next five to ten years. And we can stick with you for those since you just spoke.
Fergal:Well, I I'm gonna talk about rather than our project or talk about an institutional level. You know, our RCCI, small university, focused solely on health sciences, small university though, with a big global footprint. And by having patient contributors involved in our education programs, because we have PPI and education programs as well as PPI and research programs, I think that that's where the biggest longer-term impact, doctors, healthcare professionals, researchers, the these trainees that we train and have a responsibility to train here, Bahrain, the Middle East, in China and our new campus, you know, I think that's where the biggest short-term immediate impact will come because all of our undergraduate students, postgraduate students are now getting this exposure to realizing why it's so important to actually understand the patient voice and how we can benefit their training as well as benefiting research outcomes too.
Caitlin:Sounds great. And you're passing the mic between yourselves, but whoever would like to answer next, no?
Viveka:I guess it depends in the context that we are imagining this future. Like if I think about Ireland, I think because there has been so much work in creating the culture that I kind of see positive outcomes from coming from that. And I see that BPI could have a positive impact on kind of how science is understood and kind of democratize that. And because we have so much so many challenges worldwide with that kind of the trust to science and stuff, I think that. Could have a very positive impact on strengthening that. In other contexts, I think it could be where it has been maybe more prescriptive or where it's kind of more common top-down. I can see that being a challenge if we don't consider flexibility into it. If it's mandated in a very prescriptive way, I think that can be very dangerous and have the opposite effect. So it depends what context, I guess, and what steps you imagine on that.
Fergal:And if I just add to that, I think the biggest risk is that, anyway, that it can potentially become tokenistic. And that's what we absolutely have to focus on on the quality piece of that all the time, so that that doesn't matter.
Caitlin:Yeah, absolutely.
Clíodhna:I do think the quality is very important. And it will like focusing on quality and meaningful PPI engagement will make sure that the new people who are coming, you know, coming into the graduation and that will have that appreciation. And from the disability community, like the phrase nothing about us without us. The idea that people can meaningfully contribute to changes in processes or procedures or treatments is I think it's really important and the sense of ownership and empowerment that that gives after something that can potentially take a lot from you.
Clarinda:Absolutely.
Clíodhna:It can give you a lot afterwards.
Caitlin:Yeah, and I think Clarinda and I have felt that a little bit as well, in terms of, you know, there's something really empowering, isn't there, about taking something that's been dealt to you in terms of your health, which is really personal and really affects your life and turning it into something where you can be meaningful and give back to the community as well.
Viveka:Can I jump into that just to say that I think we also need metrics that were like or non-metrics, like ways to capture that that are not metrical precisely because like so much of the evaluation to go into the funding is like, oh yeah, like how many projects, how many publications, and like all this very number uh-driven outputs when actually a lot of the output doesn't go uh in the match of that. So I think it needs to go and pay as well.
Clarinda:Yeah, yeah.
Caitlin:Yeah, and in I know this is the case in a lot of health research as well, where it's how do we measure quality of life and patient impact, and that's something that's really evolving in terms of research outputs as well, to understand the uh the impact of an intervention or a drug, for example. So maybe a similar kind of thing is needed to understand the impact of PPI as well. Because yeah, and then if you can leverage that to show how impactful PPI is, because you know, I think we all know, and we're talking about the value, and you can see it when you're in it, but maybe from the outside it's harder to tell how much of an impact that's having. So having a measure in there would be fantastic. Thank you all so much. I think for now we're gonna pause with our questions and just let you have a sip of water if you need one, and see if anyone from the audience has a question, either for Clarinda or myself or for any of our members.
Audience member 1:My name is Aglesia, I work at ORCSI here, and we recently uh started working with the PPI partners. And I just wondered, you brought up so many good points. I was wondering in terms of kind of power imbalance, how do you deal with that? Uh, especially, you know, the academics and the patients to kind of culture that environment where they feel uh welcome to voice, you know, whatever concerns or um opinions they have in relation to our research. Thank you.
Clarinda:Do you have a preference for who you would like to answer that? Um maybe Fogel and then Cleanup?
Fergal:Sure, sure. I I I guess the more when I when I mentioned about putting a structure and a level of professionalism on it, um bringing in people like we have here in RCSI, like Michelle Flood, like Maria Pertle, like Neve Dillon, who actually helped to structure and plan and develop the meetings, the engagement is structured. That's been absolutely key to making sure that what we do is done well, that our contributors feel that they're being recognized, that they, you know, recognize and how do you check that? Well, repeat business essentially. If people want to stay involved, when we went into a second cycle of funding after a six-year initial cycle, all the contributors wanted to come back again. So, but but that level of professionalism, not having people who actually understand it. I see Neve's just walked back in. We're very fortunate to have people like Neil Dylan who drive this in our in RCSI, but that that I from from at least from my PI perspective, I think that's been key.
Clíodhna:Um I have found I don't know how much training our PPI or sorry our um scholars had, but it was either natural and innate in them or they got very good training because the relationship building really did make us feel like we could contribute valuably, and it did happen over time, and I think we became more honest and more open as time went on. And again, it was strange because it was all over Zoom in the beginning, and I didn't realize how short everybody else was, um, because it was all just a computer screen. But um yeah, it was you know, when we did first meet, it was like meeting old friends, and it really was down to how well they were able to get us to open up um through uh through honesty and trust, I think.
Audience member 2:Um thank you so much. This has been brilliant so far. And this is actually a question for for our hosts, for Caitlin and Corinda, if that's possible, and maybe then we can get responses across the way. I guess from your perspective, and you've mentioned this a bit in your interview questions, but um is there any from over the last two days of being here and being part of the festival, are there any kind of uh take homes that you would have, you know, from your perspective of meeting many people in in different jurisdictions and with different positions that are really trying to champion the same thing? Um what would you recommend, I guess, to everyone here in the room?
Clarinda:Okay. So coming from an India perspective, I think uh one of the things that I learned in the session on learning beyond borders today uh was, and I mentioned this, that for me it feels like all of this is really inspiring to see, but it feels like I'm watching something that's 15 years in the future for my country. Um and it feels like there's so much work to be done that that I don't even know where to start. But it was really encouraging for me to see that um in Brazil they've started a collaboration with the PPI Ignite Network here in Ireland, and that there is some work being done in one university in Brazil, and that is, for example, a model that I can take back. And so my learning is that you can start small, you can start somewhere. Uh, you know, and all of this that that's here right now started as a tiny little seed, and and then it just grew and grew. So I think that that there is no, it's fine, not just patients started as just one episode, and we're here today. So I think just go back to wherever you are, that's the the main thing, and start somewhere, and and that's my learning, and that would be my take-home message.
Caitlin:Yeah, and I think uh what I'm struggling with at the moment is trying to find one take-home and summarize and not take up the rest of the time. But I think in in a similar way, so I'm based in the in the UK, so PPI is moving forward more so than India, but I don't think it's quite as integrated as what's set up in the PPI network here, to have it so embedded in, you know, across several universities about this is what should how it should be involved in research. And so many examples of that done really meaningfully, rather than just sort of a last-minute tick box exercise. And I have heard many sort of horror stories uh about how that's been done before. So hearing about how effectively it's been done earlier, how it's been made really, really accessible, I think, has been one of the things that's come across as well. So not just having someone in the room, but making sure that they really understand what's going on, understand what their role is, what's expected of them, and made to feel like an equal partner who can meaningfully contribute to that has been really amazing to hear. And I think from yesterday talking about bringing, you know, educating students on how to do that so that really on in their research they know what PPI is, they've experienced it and they know how to bring it in. I know there's a few students in the room as well who are learning this now, and I think it's really fantastic because a lot of people are late in their careers saying, Well, I've done research all my life and I've never had to include a PPI contributor, so why would I do it now? So having it taught at those earlier generations, I think, is the best way to really embed it, and having that framework across fit across lots of different universities across Ireland is a really cool way as well, because it's otherwise it's I think really hard for an individual institution to have the time and the energy to bring in those structures and those practices. So yeah, just in impressed and inspired, I think. Yeah, do you do you have any key learnings that you've learned from from the last two days from anyone else?
Clíodhna:Uh the passion that is evident in both well ev everyone has really been striking. Um it as I said in the beginning when I got involved in PPI, it was small and young, and I didn't know what it was. And seeing what it is now is fantastic. It it really is. Like it's it's meaningful, and people want to do it because they recognize the value. That's fab.
Caitlin:Amazing. So I guess we we've covered this a lot, but as we've mentioned, you know, from our perspectives from outside Ireland, it really seems like Ireland is a world leader in PPI at the moment. So, what advice would you have for other countries who are looking to start incorporating more PPI and what are the best practices that they can follow? Maybe Fergal, this one is a question for you.
Fergal:Well, in some ways, you you you often learn more from what didn't work than from what did work. So I guess I would encourage people to talk out, to, to, to, to talk to people in the network, you know, from the HRB, from the entire network, to get their perspectives on what has worked, what has not worked as effectively I can talk about from an institutional perspective. But it it it it hasn't been uh you know suddenly worked. It's taken a lot of time and effort and focus to try and and develop that. I think and I I thought with the when we were developing our new strategy with institutional strategy, I think some of my colleagues on the senior management team, I think some of my colleagues on the senior management team probably got a real eye opening on the value of the contributions when we started to have co-sessions with some of our patient contributors in what they thought healthcare in the future should look like, what trainees of the future should look like. You know, and it's reinformed clinical practice. I think it's made clinicians more empathetic. I think far more understanding of the famous line of where healthcare is going now, your your patient will see you now. That's kind of the shift in terms of how we train both research trainees and how we train doctors, pharmacists, healthcare professionals back over that. And that comes about because of engagement early in clinical training, early in research in terms of how we do how we develop that.
Clarinda:Thank you. Thank you, Fergal. Uh Viveka, uh, what advice would you give to researchers who want to embed PPI in their research?
Viveka:I think if they have the opportunity to start as soon as possible, that is something very important. Like, don't wait till you have defined completely your study and where you're going from that. Because if you're able to build those relationships early, that's gonna be really helpful. And if you have those discussions, uh even though you might not know specifically what you're gonna do with that information, that's gonna feed in into a more robust uh study design. So start as early as possible, then kind of remain strategic and creative about how you use that limited funding and limited time, and maybe try to focus on very specific uh key activities and try to do those really well and keep in touch with your contributors because then you might be able to bring them on board after.
Caitlin:Um, so yeah, I think that's that's me. That's fantastic advice, thank you. And then, Clíodhna what advice would you give to patients, caregivers, or members of the public who want to become involved in research as a PPI contributor?
Clíodhna:I would definitely encourage people to say it to all of the people at the appointments, um, all of the if there's charity organizations, so they're involved in uh advocacy organizations, like you you do have to be a bit brave, you do have to put yourself out there, but you know, it's it's generally well received. And if it's not well received by one person, that's okay. Not like it's not for everyone, and not everybody understands the value that PPI will bring, and that's not their fault.
Clarinda:Yeah, yeah, that's a great great advice. Thank you. And finally, uh, in one sentence, each of you, um how has PPI changed you personally or professionally?
Fergal:Um I I guess I talked about definitions becoming more empathetic. I I think it's had that direct, you know, me. Uh I think I've become a better communicator as a as a result of it. It's helped me to think about more on I I guess we always try to try, I always think of research, when we do research in an institution like this, we need to think beyond papers and PhD students. And we absolutely want to train PhD students, and we absolutely want to publish lots of papers, but we really need to think about how do we get the research out of university labs to more and think about how to benefit patients in society. Because when you're working with contributors, members of the public, and patient contributors, often the first question is, oh, this sounds really good, but how soon will we actually see it in use?
Clarinda:Thank you.
Viveka:I think for me the change has been kind of deconstructing that idea that good science happens in that ivory tower uh space, but actually it's happening at the community, and that's where you would kind of have the biggest impact, strengthen your research, strengthen your skills as well. Um, so yeah, I think it has changed who I am as a researcher and what I see myself as a researcher I want to be in the future.
Clarinda:Could you just remind me of the question again? How has PPI changed you personally or professionally?
Clíodhna:Um I have become an awful lot more comfortable in myself. I've also become a lot more confident. Um they're the two absolutely massive changes that I've noticed.
Caitlin:Thank you all so much. That's our last question, unless you have anything else you think you've not covered in that. Oh good. Well, Fergal, Clíodhna, Viveka, thank you so much for joining us on the stage today. And thank you so much to the PPI Ignite team and RCSI for inviting us here. We've had a really great time.
Clarinda:And thank you all uh for staying back. It really would have taken a lot out of you to be here for the last one and a half hour of what's been an intense two days, but it we're really glad that you stuck around for this. And I hope you enjoyed it. And it was great being here and doing this with you all. Oh, yeah. Uh please don't forget to like, subscribe, and uh, we're also on LinkedIn. You can follow us and check us out, listen to our episodes, and follow Not Just Patients.
