Episode 2: Patient and Public Involvement

In this episode of BJD Talks, we delve into the evolving world of patient and public involvement. Join guests Dr Carron Layfield and Bernd Arents as we explore its origins, how to do excellent PPI and some of the challenges facing PPI in the future.

Transcript

SPEAKER_01 0:18

Hi there and welcome to BJD Talks, the official podcast of the British Journal of Dermatology. In this podcast, we aim to look beyond our published studies and explore the real-world implications of dermatology scholarship in a relaxed, accessible way. Whether you're a dermatology professor, researcher, registrar, patient, or simply a skin enthusiast, we'll hope you'll join us as we build on our world-leading research through friendly discussion. My name is Dr. Johnny Guccian, and I'm a dermatology registrar in West Yorkshire, as well as the BJD's Podcast Associate Editor. I'll be your host as we dive into issues as wide-ranging as climate dermatology, artificial intelligence, and patient and public involvement in research. Outcomes for patients are at the heart of what we do with the BJD. So we felt it important to begin our wider view of dermatology research by focusing in on our patients. The formal involvement of patients and research began at the close of the last century and since then has become integrated into our academic practice. But what are the benefits of patient and public involvement? How does one do good PPI? And are there any potential risks, harms or challenges for patients? To answer these questions and more, I am joined by two fantastic guests. I'm delighted to first of all welcome and introduce Bernd De Rentz, patient advocate at the Dutts Association for People with Atopic Dermatitis, VCME, and is also Patient Associate Editor at the BJD. Hi Bernd. Hi Johnny, thank you for having me. No problem at all. I'd also like to welcome Karen Lafield, UK Dermatology Clinical Trials Network Manager. Part of Karen's role involves coordinating patient and public involvement activities for the UK Dermatology Clinical Trials Network and the Wider Centre of Evidence-based dermatology at the University of Nottingham. Hi Karen.

SPEAKER_00 2:11

Good afternoon, Johnny. Delighted to be here.

SPEAKER_01 2:13

And thanks so much to both of you for coming along. So, I've thrown around the term PPI in this episode, and I think some of our listeners might be thinking I'm talking about Lanzoperazol. Bernd, can you just explain to me and the listeners as to what patient and public involvement or PPI in dermatology research actually means?

SPEAKER_02 2:32

Well, Johnny, it actually means that at all stages of research, and that's from priority setting to publications to guidelines and everything that's done in between, that patients and the public are consulted or engaged in the whole process. And the reason is that of course healthcare and health research is always about patients. And patients can best explain what they what their unmet needs are, how they could participate best and optimum in uh in research, and also when drafting the study, the journal paper, that can be very helpful to get the patient perspective there what is important to patients, like what does the study add? It should add something that is important to patients. And of course, those studies are going to be involved in uh systematic reviews and guidelines, and also there it is, what are the needs in daily practice? What studies do we have? Do they mean something to patients and what recommendations come from that in terms of benefits and harms? So it's always important to uh involve patients at all stages. And what's also important here to mention is that with patients there can also be carers. Because of course, in the case of children, it's the parents, but there are also people who are incredibly sick or maybe incapacitated somehow that they can't advocate for themselves. So carers are also playing a big role. So it's it's a large concept. It's not only people who have a condition themselves.

SPEAKER_01 4:02

Thank you, Baron. And that's really interesting. So it's it's putting the patient at the centre, but not just the patient, um, their wider community, and making sure that there's appropriate advocacy. You you've mentioned about the importance of patients and putting them at the centre of everything that we do. I wanted to get your take and your I wanted to hear more about your journey really um in this because I've I've obviously introduced you as the BGAD's uh patient uh editor. How did you get uh involved in uh patient and public involvement in dermatology research?

SPEAKER_02 4:34

Well, of course, this is important to know that um I'm 57 and I have 57 years of severe atopic dermatitis. And I started, I think, um 25 years ago as a patient advocate uh in with the Dutch Association for People with Atropic Dermatitis. Also been on the board there. And my journey uh started in 2002 when the first guideline on atropic dermatitis in the Netherlands was being developed. And we had an eminent professor, Professor Carla Braunzil Goleman, and a lot of them, uh a lot of people who listen will know her. She was um the head of the center of uh expertise of uh atropic dermatitis in the Netherlands, and she said we're gonna do a guideline uh she's gonna involve dermatologists, pediatricians, general practitioners, methodologists, but also three patients. So that's where my journey started. That's also how I became a bit familiar with the methodology and the jargon which comes with the territory. And uh I was fascinated, fascinated by how this process works. So she was really an innovator and a visionary, and uh she kept us involved until the day of today. And to see how far this went is that I've done a couple of guidelines in the Netherlands and uh also be part of commissions of the Dutch Society of Dermatology, that they made me an honorary member as a patient from a dermatology association. So it can go that far that when you do it right and you help the patients evolve and educate them, you can come a long, long way. And I think that in dermatology they're a bit more forward than in some other areas, I think. But um I don't know for sure.

unknown 6:18

Great.

SPEAKER_01 6:18

Well it's good to see that dermatology is pioneering uh in in this area. And speaking of pioneering, Karen, um you obviously do quite a lot of work in PPI with your institutions. Can you just tell me a little bit about a bit about um what the DCTN and the CEBD get up to in PPI?

SPEAKER_00 6:37

Yeah, of course. I mean, um I came to work at the UK DCTM back in 2007 and was really lucky, really. And uh we're based at the Centre of Evidence-based dermatology with Professor Hal Williams and and Howell is the chair of the network, and it's always just been a natural part of what we do before it became you know the in thing to do PPI. So that's great. And in the network itself, we have patients involved in our executive committees, so right in those, you know, business end that decision making in our steering committees. So when um trial proposals are presented very early on, we're getting PPI input right at those early stages and at the Centre for Evidence-based dermatology. Um, to give some cohesion and community to our patient involvement work, we set up our own patient panel back in 2009. So that's been going 12 years now, 12 to 13, 12 years. Uh, and you know, and there are there are a great bunch of people, about 35 people across the UK, as Bernd said, not just patients, carers as well. Uh carers of small children with eczema and family members of people affected by other skin conditions as well. And it's a privilege to work with patients and and do the patient involvement thing. They bring their lived perspective, and that is just such an important thing to bring. And so we involve patients all the way through the study lifecycle. I'm I'm really speaking about this from a from a very applied health research perspective and that of clinical trials. So, you know, we're we're thinking about the evidence gaps, the Cochrane systematic reviews, setting priorities, developing patient-reported outcome measures for how we measure differences in studies, the development of the research question, the management of research itself, the getting the funding for the research, the patient perspective in simple things like, you know, in a study protocol, how many appointments a patient will come to clinic for, all those sorts of things that we as researchers and clinicians may not think of, the timing of clinic appointments, reviewing literature to make sure it makes sense. Sometimes we can lose perspective of what is easy to understand as a non-scientist or someone outside the field. And then we come into the management of the studies, we have patients naturally involved in trial steering committees and those sorts of things. And then output as well, you know, reviewing the data and dissemination as well, making sure that we're not just targeting study results to the scientific community but all users of research.

SPEAKER_01 9:25

Well, well, is there anything that you do that that you don't do, I guess? I think you've just described the entire journey of uh the research process. So uh that that's pretty impressive.

SPEAKER_02 9:36

If I may add to that, uh Garen, is that um what also was done in the Center of Evidence-based dermatology by Hyber Williams, which is a fantastic, fantastic innovator in dermatology, was the home initiative, the harmonizing outcome measures in eczema. I think it started about ten years ago, and it was an international effort because if you want to have a core outcome set, all researchers in all the world need to use it in order to be able to make you know to synthesize the data and and compare studies and compare outcomes. And it is uh quite an undertaking, but it it really pays off because it's a real solid core outcome set that is uh that that is used all over the world. And it was also such a pleasure to do to see that it would yield what it has yielded. You know, that's that all the studies they are reporting, the patient-oriented eczema measure, uh they report uh the ET scores, etc. etc. And that's a fantastic example of how important Center for Everybody-Based Dermatology in Nottingham has been in eczema research. It is um no worse to describe, actually.

SPEAKER_01 10:41

I think it's it's great that all of this is built on really strong foundations and values. Um so we've already been talking about things like community and advocacy, but then also excellence, and that all translates into genuine output as well. So um I will hear from both of you in terms of maybe some some homework that I gave you, uh, and that you can tell me some specific examples of excellence in PPI shortly. Um but first of all, Karen, I wanted to ask, I'm quite fascinated by the the history that we've got with with PPI. And I know I mentioned that it started a few years ago at the end of the 20th century, but uh we have come quite far, I understand. Can you tell me a little bit more about the history of PPI?

SPEAKER_00 11:24

I think if we think about the history of PPI, really, it's just I think a natural follow-on from that patient empowerment in shared healthcare decision making. And in the UK, we we're really quite advanced now, I think, in our patient and public involvement work. And there are lots of reference sources and sources of of material that people can go to to look at that um and and to find out more information. I think we, you know, if we look back, maybe we look back, you know, there have been some healthcare scandals, you know, like the older hay um retention of organs scandal, and and then also maybe AIDS as well, I think, and that really really gathered that sort of patient empowerment and patient voice together. And it's all sort of let led on to this natural evolvement of research and and involving the patients in the research process rather than just as participants as research. It's it's doing it with rather than to.

SPEAKER_01 12:28

Yeah, and I think it's it's probably quite appropriate that that the um well and and telling that it it took patience really to to lead on this initially and give our community a bit of the the kick that it needed to um uh to really involve them appropriately um so they can meet their needs. So I guess the big question is then, um Karen, why does PPI matter? Why do we do it?

SPEAKER_00 12:50

It matters on so many levels, and I think I think you can really break it down into some sort of key areas. So you've got the methodological argument that we've already spoken about patient carers bringing their lived perspective, seeing things differently to researchers and clinicians, grounding the research, keeping it real, so it improves the methodology. We've got those moral and societal arguments that patients are key in healthcare, they're the people who receive the healthcare, so why wouldn't you involve them? And also, most of the money that is used to fund research is, if you will, our money is taxpayers' money, it's government money, that money comes from somewhere. And so, why wouldn't you, you know, involve the people that are essentially funding the research? And if we look at it at a policy point of view, policies are changing with regards to this. And this is at both ends of research. So if we think about the the one end of research when we're getting research funding, we can't do research for nothing, you know. Um funders are increasingly now, you know, insisting that PPI is an integral part of the research process and is integrated throughout research. Um, so for example, the National Institute for Health Research. And also at the other end, at the publication end, if we look at the BMJ, some journals are really now pushing researchers for this. Quite a few of the BMJ journals now, you have to have a patient and public involvement statement in your methods. And you know, increasingly other journals are following in this sort of approach as well. So I think if we look at all that, we've got the you know, the methodology, the policy, and the moral society. It's a really important thing to do. It's the right thing to do.

SPEAKER_01 14:40

Yeah, that's absolutely key. And I think you'll we'll probably find that as this becomes integrated into uh well increased importance with funding and disclosure with publication and output, uh, then the the it will all snowball even more. Um because you have to change systems uh to pioneer new movements uh and new initiatives. It's much easier to do to to improve systems than it is to have key individuals. Thank you so much. That's that's you've got me sold. Now, when it comes to examples of this kind of work, our listeners, I'm sure, will be sat at their laptops ready to break out some some articles, hopefully some BJD articles, um, to to uh to read about some good PPI. So plug some good PPI research with me. Uh Bert, can you tell me some examples um or maybe your top example of uh great PPI involving studies?

SPEAKER_02 15:36

You know, Johnny, this is such a difficult question because of course there's so many research out there and so many publications, and I I think to just to start with one who uh who does this already for so long and is a Cochrane collaboration where you know where consumers were a mandatory part of it and where plain language summaries were mandatory. No, that's that's that's uh for instance one thing. So all the publications from Cochrane should have excellent uh patient in involvement, maybe some better than others. I mean, I co-wrote two Cochrane reviews, so they are excellent. I can tell you too. I did, for instance, uh, of course, together with um uh uh Professor Johannes Ring, a study of the burden of people with autopilot dermatitis in Europe, it was published not in the BGD, but it was co-led, it was paid for by the European Patient Society and it was co-led and with me as one of the lead researchers. So you look at the outcomes differently, I think, and uh and the priorities are are different. And I'm not gonna say that's excellent research, it's just good research where patients were involved from the beginning. And there's so many other areas, like I said, the core outcome sets. You know, the um all all the publications on home, you know, they are they are an excellent example. I think that's it's it's very difficult to highlight which one are excellent examples of patient involvement. Because they're not easy identifiable either. I mean, if you would look at the BGD, I I could not filter out which ones were co-written with patients. I mean, I'm just listed as an author and sometimes in more in the beginning and sometimes more at the end of the string. I mean you have to read the affiliation and then understand if they are. It's it's not no, it's not indicated, so I can't filter you know which ones were uh done with patient and public involvement or not. So that's that's difficult. An another thing, maybe not about a journal, but uh part of it is that another organization that does patient and public involvement very well is the European Medicines Agency. It was also a bit driven, I think, by the uh HIV H crisis. I mean, you do already for over 20 years. People may might not be aware, but there are five hundred uh uh patients involved every year in the activities of EMA. There are two on the management board, there are people in all the committees, all the patient leaflets are being uh checked by patients. I myself did a keynote speech Friday for EMA internally because I'm in the scientific advice working party, which means that I am advising from phase two to phase three design. And so you have influence on the protocol from industry design studies. And actually 20 to 50 percent of the advice letters from the EMA have been influenced by the opinion of the patient reviewers. So it's everywhere there. I mean, it's it's um what people may might not be aware of. So sometimes we are invisible, you know, because I'm sitting at my computer for days and days to go through a difficult dossier and then come away with my points. But it's there. It's not so visible maybe, but it's there. And I think that that's a great example. And of course some of those studies are being published in the in the BGD, but you can't distinguish like what did the patient do or not. There's only one example, if if I may I if I may add. I mean, when I co-wrote the Cochrane review on emollients in eczema, uh it was peer-reviewed uh by of course by Cochrane, and it came back and it there was a comment from Professor Williams, and he said uh there's a particular nice sentence in the in the implications for practice, uh this in the sentence. It was just maybe written by Baird so because we don't need each other and that was you know one of the most uh uh joyous days that I ever had, I think. So it's it's I think it's it's it's more and more getting into there, but it's very difficult to to pick them out like which are the best. I don't know if Karen has any other striking examples.

SPEAKER_00 19:41

Yeah, I mean a nice uh example to look at maybe would be the highlight vitaligo trial, which was published I was gonna say last year, but I think it was the year before now. Now we're in 2022 in the BJD. And you'll have to actually dig a little more than the BJD publication and and go to the funders report, the National Institute for Health Research HTA report. And I think it's chapter six in that report, which really outlined the PPI in that study, and it's we've talked about through the life cycle of a study and the importance of that. And I think this study is a great dermatology example of that. So the involvement of patients, of course, in that Cochrane systematic review. If we've we've just heard Bernd say Maxine Wissam was it, was the lead author of the original Vitiligo review, if you remember. You know, Maxine's a patient, and then we've got the priority setting partnership, which we're going to touch on, and the priority setting partnership for vitiligo identified this study as a priority area. The study looked at a new outcome measure for the trial to look at whether the the treatment was successful, the development of a whole new patient-reported outcome measure, the vitiligo noticeability scale. Patients were involved in the management committees for the study and the data review, the you know, the images, as well as clinicians reviewing those images of whether the vitiligo was more noticeable or not, uh with the with that vitiligo noticeability scale. Patients were involved in that work, that that data review work as well, and in the in the dissemination of the study. So I think that would be a really good one for people to look at for all aspects of the study. If they want to look at some co-production work in dermatology, then there's been a recent paper in the past 12 months or so in BMJ Open with Fiona Cowdell as the lead author, looking at some co-production sheet work she did on eczema mind lines and how sort of patients gather all this information together around their treatments and things. So that's a really good one to look at. And you know, and if somebody just wants a general review, we've got the you know, impact of patient and public involvement. On enrolment and retention in clinical trials. Big systematic review that was published in the BMJ two or about three years ago now. And there's of course there's a dedicated journal now for patient and public involvement work, which is uh called Research Involvement and Engagement. So if you you know you want some real niche stuff, then have a look in there.

SPEAKER_01 22:22

Great. I mean you you both get an A star for your home for your for your homework. Lots and lots of examples there for uh uh listeners to get to get started on. And I just wanted to touch on something that you mentioned, Bernd, but then also Karen, you discussed just about that that accessibility and clarity that patients have been involved. Do you do you guys think, you know, critically speaking, do you think that that we in the BJD or we as the dermatology resource community we should make it clearer as to the involvement of patients uh in research? And if so, how do you think we can do that?

SPEAKER_02 22:54

I'm a patient associate editor at the BGD, and at the time I was together with James Burton. We wrote an uh editorial, and the BGD is about a year ago, about where where do we stand, you know, because uh we look at plain language summaries, we try to disseminate, we try to involve the patient community. Uh it's uh it's also a bit about what it says is I mean the the slogan from patient participation, I think, from along on, but also used by Acts of AIDS activism was uh nothing about us without us. And um they were occupying uh pharmaceutical companies because they want to have a seat at a table. And uh we use a bit that metap metaphor that as patient editors, we are sitting now at the table, you know, we're not on the menu. And now we had the we had the first course and uh we're going for the second one, and of course we we're finding our ways because there's no template how to do this. And one of the things what what what we propose for in there, I mean, we have all kinds of checklists that you have to put in with uh with your manuscript, with whether there's a consort statement or Christmas checklist or strobe or all the acronyms that you have. Why not uh have there also a box were patients involved yes or no? And if it's no, then it's not gonna be accepted. Or what the BMG does is is state clearly how patients uh and public were involved. So I think it's uh it's it it goes in steps, you know. The BGD started with it and we're trying to find our fall. And then it's uh a way how to how to go forward and how to ensure maybe like with the grants uh and and the funds, what um what Karen was saying is that uh also in the Netherlands the fundamental organization requires patient participation. Otherwise you don't get any money for research. So that drives also the patient participation, and if you would have also stricter rules in a journal that uh the patient participation should be clear or even marked on a checklist, or maybe even even a patient participation checklist, like where were they involved? I mean that could be a waste, but you don't want to force it out. It it needs to grow uh naturally as well, because another part is of course when you have patient participation in like priority settings or in in and guidelines, it's a bit different than for instance what I've been doing for EMA. You have to have some skills and s a bit of knowledge about methodology. And also, I I mean I spoke about in 2002 how the professor invited me. I've been a patient all my life, then I was I think 35. And I never had the privilege of seeing such an esteemed professor in the illness that I have. And suddenly I was sitting next to her, she asked me to uh to call her by her first name, which I couldn't. I called her professor for 10 years before I could say Carla. So you also need a way to train patients and to be able to participate. And there is a great initiative that I want to mention here. Uh this is the European Patient Academy, it's UParty E U P A T I. They give courses, online courses. So any patient who wants to know more about uh participation in research, go to UParty. It's fantastic. Thank you.

SPEAKER_01 26:04

Karen, do you have anything to add to that?

SPEAKER_00 26:06

I mean, yeah, just to pick up on a couple of things Bernd said, I'll I'll I'll start with what he finished with, which were the training opportunities for patients. And there are lots of online opportunities as well via the National Institute for Health Research. Uh, and there's one of these um sort of do they call them massive online courses, MOOCs, available about you know what it what is clinical research, what is research, takes you through all that sort of thing. So for for interested patients, there are there are lots of resources and opportunities, as there are you know lots of information for clinicians who want to engage more as well. And and I agree entirely, it's an organic evolving process, I think, for the dermatology publishing community. And it's great to see the these steps, positive steps being made. And I think we've also got to recognise that it's a different process for different types of research as well, and that one size isn't going to fit all in that sort of output and dissemination side of things, I think.

SPEAKER_01 27:04

I'm very glad you you described the uh massive open online um courses because that's one of those things that's very hard to say in a Northern Irish accent, MOOC, uh, is what I say. So people never know what I'm talking about when I describe those. MOOC. Um we've been talking about drivers for uh involvement of the researchers and the journals and the various systems that we're a part of. And Bernd, you touched on a kind of a almost a carrot and a stick approach uh involving funding and um your papers just just doesn't get accepted uh if you don't involve patients. What about patients? It sounds like it's a lot of time and investment for them. What do patients get out of it?

SPEAKER_02 27:45

If it's done all right, what's what the outcome is, is better outcomes, better results, better usable information. It it should uh in the end yield to things that matter to patients. So that's what's in it for them. And if you ask people why would you participate in, for instance, in in drug research, a lot of people, of course, will say I do it for myself, because maybe this is an opportunity for me to get it and grip medicine. But a lot of people will also say to advance science, you know, I do it for also not only for myself, but also for the other. There's also a moral aspect of it. And maybe this is a bit heavy uh to say from my point of view is um not only atopic dermatitis, but some other things that make it make it for me not possible to work anymore full-time. That means that also changing the uh disappointment and sadness of having a disease, you can transform into positive action and change the world by saying how you feel and how others feel, how other patients like me feel. Because you know, I'm I'm I'm embedded in my patient organization. I've spoken on with the helpline with over 500 parents to uh adolescents to uh the elderly, and so I have I have a broad view, and I sit there with pride that I can speak on behalf of them who can't speak at their at the table, you know. It also feels a bit like an obligation, but it also gave me, I mean, when I started in 2002 and now I lost my my ICT career, but now I am an editor at the British Journal, you know. It's it's it's it it's an incredible journey that also gave me a lot of satisfaction, you know. And uh maybe it came at the right times. I I that I r I uh that I was running on the wave of patient participation. But it's uh it's incredible that I lost so much, actually, and I I had to my horrible, horrible uh childhood and also periods in my life that I can change that around and help others and and help and and have a sort of a career of myself. And I don't know but um for any researcher how it was how it must feel when for the first time your name pops up in PubMed. Sorry, it's a bit maybe narcissistic to say so, but it's uh special that that that you that you can become an equal part of the research community as a whole because you have to do it all together. And that you're recognized as such and treated as such, you know, with respect and openness and um but like I will Williams says in in his lectures, patients are your colleagues. They're not subjects or objects. I mean they are your colleagues, you have to do it together. And that is an incredible payback, I think, for the efforts that I put into it.

SPEAKER_00 30:27

I'd agree, you know, I mean everything's been said. I've worked with a lot of patients over the years now in PPI, and and that feeling that you're turning something negative into something positive really speaks volumes, I think. And that uh also the altruism is is another reason that's quite commonly given by the people I've worked with, and also learning more, finding out more how you know how to manage their own condition and sometimes as well cope with their condition. That's something that's often been quoted back at me. And also it can be quite a good way. We have had some people get involved in our patient panel who've gone on to have a bit of a career change, and they've gone on and used the skills and experience they've learned through patient involvement to say change from working in banking to working in more of a community-based organisation, and as well, if if we're getting funding now for patient in public involvement work, we can pay patients for their time, you know. So there are some payment opportunities as well for patients to get involved.

SPEAKER_01 31:33

Thank you. Particularly, Bernd, thank you for sharing um your experiences uh with us with with regards to this. I think that was very, very powerful. And I'm hearing a lot about identity and about how you can kind of reaffirm or take control again of how you see yourself and your relationship with a condition that you may have, and again, belonging and being part of uh community and advocating for others. So, again, coming back to the the values that we talked about at the start, and um it really does seem that you embody those. We've been talking a lot about jargon, um, and a few times we've mentioned priority setting partnerships or PSPs, is something that I that I I've I've come across in doing a bit of uh working PPI kind of as a as a junior researcher um myself. Karen, can you break down the mystery for us? What is a priority setting partnership and where could our listeners go to to read more about these?

SPEAKER_00 32:27

Well, uh really a priority setting partnership is just a word for a process that brings stakeholders together that have a shared interest and concern in working together to identify and prioritise evidence uncertainties in a particular area. In dermatology, I think we've had over 10 done today now, completed, many of which have been published in the BJD. I'm sure you'll be delighted to hear Johnny and know that already. Um, but if people want to sort of find out more about the nuts and bolts of what a priority setting partnership involves, I'd recommend looking at the James Lynde Alliance website because that's the organisation that facilitates priority setting partnerships in the UK. They're not all done in the UK anymore. There are some international ones in other conditions. And there you'll see all the lists and all the links to the relevant papers and everything. And when I say they bring stakeholders together, this isn't methodologists and researchers, this is stakeholders, as in the treatment givers, the treatment recipients. It really provides that that opportunity for patients and healthcare providers to shape the health research agenda together. And they are really quite, I think, powerful levers in under-researched areas. So you work together to identify, and the aim is that you that you come up with this often a top 10 list of jointly agreed research priorities, which you then push out and publicise to all the community. So for researchers to pick up and do studies on, but also for funders as well to pick up and commission research on. And where I said the levers, you know, I really don't think we mentioned the highlight study already on Vitiligo. I'm not sure we'd have seen that study had we not done the priority setting partnership. Um, the same with the thesis study that's ongoing at the moment for HS. You know, these under-researched, previously under-researched skin conditions are now getting funding because you can show to the funder that this is a research priority for everyone. You know, lichensclerosis, we've had the SAFA study, spranactone for adult female acne funded. And it's not just trials either. We've there were there was a funded systematic Cochrane systematic review recently for hyperhydrosis, you know, and I that that was funded as part of you know the outputs from a priority setting partnership there. So, yeah, have a look at the James Lind Alliance website, have a look at the papers in the BJD. And just to finish on this, we've got two more priority setting partnerships in skin ongoing at the moment. One on skin surgery for skin cancer, and the second stage survey has just been released for that. So please do go and look at that, people. And then one on uh treatments for pemphigous and penthagoid as well, and the second stage survey for that will be released shortly. So, again, go and have your say, say what you think are the priorities.

SPEAKER_01 35:37

Fantastic. So patients are really uh helping to uh readjust and and reshape the agenda for research, which is brilliant to see kind of from the start. And I I would echo what Karen says in terms of checking out the James Linda Lions website, because quite a lot of what we've talked about and the principles of what we talked about really uh can be seen in action there. So my quite final question for both of you. PPI is obviously quite clearly a noble goal, and we've discussed that at length today, but what are the challenges that we face uh in doing good PPI? How and how might we overcome these? Barrett, maybe if I start with you.

SPEAKER_02 36:18

Let camera said forward that there is no templates, you know, with and because priority uh setting is something different than doing a systematic review or being part of um of a project team of a study. So you need different kind of skills at different stages. For instance, if you have a study done and you make a patient in uh information leave it on a study, you're rather uh like it read by someone who is just a patient, you know, not saying it's the in a negative way, but without the bias I already have, I call myself a deformed patient, you know, because I I understand everything is that you you also need some people with a fresh look at things. So it it needs to grow. I think it has grown enormously already. And I think that the initiatives like the democracy was were talking about or your party uh or the fact that patients are getting paid so that the mid-day can maybe also be employed by patient organization. It is it it it is growing, the knowledge is growing. And I think you um what you said, I I think it patients and public participation is essential. You know? And uh we're getting there. I mean, I think the um there's the the right momentum. You also see it in civil society where things are changing, you know, more protests or more d people that want more democracy, you know, all all kinds of things are happening there. So it's uh sign of the times and it needs to it needs to evolve and uh uh we need to partner up as equals to make that happen and to bring it to another level. And I think we already got quite far, but it needs to be more organic and self-evident that patients are always involved or asked to be involved. Sometimes it's not always possible, but at least, like I said in some lectures, as a researcher, always always have in mind how could I involve patients? That that should be part of your mindsets, part of your DNA. And I think also with the years going on that younger researchers are maybe more prone. I mean, there was so much distance between patients and professors uh forty years ago. I mean, that changed enormously, and now have them in oh my what, WhatsApp, you know? It's completely different. These relationships are not so hierarchical as they were. It's more approachable, and patient organizations are quite visible, they have the knowledge, they would sometimes some are really very well structured. They're very good umbrella organizations, for instance, for rare diseases, the neurologists, for instance, is is incredibly uh well organized. And so it it has to grow and the mindset has to change. And I think with every year it's gonna be bigger and bigger and bigger and and more self-evident that patients are just part of research in every stage and and not just a subject.

SPEAKER_01 38:59

Brilliant. Thank you. That's uh I mean just the thought of having my professors on my WhatsApp um is kind of giving me chills. Like coming under hot sweats. So I don't I don't I I don't uh I can't imagine what it feels like for you. Um but uh that's a it's a it's a powerful image, uh certainly. Um Karen, what do you reckon are the are the big challenges for uh for PPI?

SPEAKER_00 39:22

I think the challenge is at a sort of multi-level, really. I think the fact that it is, you know, has been such a rapidly evolving, changing, growing field is is a challenge in itself for for sort of researchers coming into this and new reachers saying, God, where do I start? You know, where do I actually start to find out information? I mean, we're very lucky in the UK with the National Institute for Health Research, and there are some excellent guidelines on their website for both researchers and patients and carers who want to get involved in PPI. So I'd say that's a good start. Who do I involve? I'm I'm a researcher just starting out. How do I find these patients? You know, you know, that can be these are the basic challenges, I think. Um, you can advertise, you know, there's a website called People in Research. You know, you've got a project, stick the details on there and ask around locally as well. But if we look at the bigger challenges, it can be diversity, I think, is a huge challenge in patient and public involvement in research, and we need to we need to encourage more diversity because research needs to be for all patients who are affected, and we need to think about our patient populations in research. And I mean, there's been a new directive recently from the New England Journal of Medicine, of course, addressing exactly that that now when studies are reported in that journal, they want evidence of representativeness of study group of your um child population. So if we want representation in a study, we need representation in our PPI. If a patient going into a study is gonna read a patient information leaflet that says, blah, blah, you will be, you know, maybe considered, is your skin red and inflamed? Well, if your skin doesn't look red when it's inflamed, how are you gonna feel that that study's for you? So I think diversity is really key. And I think we've talked about funding and how it's great we're now getting funding through for PPI, but it's that challenge for before the studies are funded. What do we do then to try and help compensate people for the time? And also the structures we have in our institutions to sort of administer these payments for people once the studies are funded. We we need to make that easy for people because sometimes it's not, and I think that can put people off as well. Capacity building, we've spoken about with all the you know the training opportunities and things like that that are available.

SPEAKER_01 41:58

Yeah, I mean, I think that's plenty to be gone. Let's not put everybody off with with even with even more. No, but um honestly, I think I think too many challenges. Never too many challenges. I think I think uh the dermatology community is ready to take on anything. I think I was really quite taken by um particularly what you said about diversity and that relationship with representation and representativeness. Um that's something that the dermatology community is waking up a bit more to now more generally in academia, and it's something that does matter to the BJD, and this is one of the benefits of having these podcasts uh in that we are aiming to discuss concepts rather than just the the kind of the purity of uh the academia uh within the research study. Uh and one of our episodes that's going to be upcoming is going to be specifically on uh diversity and inc and inclusion in dermatology research. We can't go into it now in significant detail uh because it's such a massive topic. But uh, I recently wrote an editorial for the BJD uh in one of the most recent issues, just saying that dermatology is finally talking about race. And this is an area which demonstrates how it's not just a case of making tokenistic gestures to say, oh, we recognize that we have to meet all skin types or skin tones and all different types of people. Well, actually, we need to massively change our systems, and you can't do that without good PPI. So this is not only our patients at the centre of what we do, but PPI should be at the centre of all the research that we do.

SPEAKER_00 43:29

Exactly, Johnny. We did an initiative recently to celebrate International Clinical Trials Day, and who even knew there was such a thing, but there isn't. It's around the 20th of May every year. And we did it on a a survey to go out to patients. Well, not not the patient community, the world in general, on you know, how do you describe your skin? What words do you use? What language do you use? Yeah. We got in uh so hopefully you'll be seeing that come out soon being published from the CBD.

SPEAKER_01 43:57

I keep an eye out for that, and uh. Bring a cake in to work um on it on uh International Clinical Trials Day. Well on uh on that that happy and uplifting note, I think we'll we'll uh just draw this uh chat to to a close and because that really brings us to the end of the episode. And we've covered the the history and the meaning behind patient and uh public involvement in research and we've pointed out where uh you as a listener, as a researcher or a patient, can really get started. And hopefully we've got you all uh sold on on the values of community, advocacy, excellence, and more to get you started on good patient and public involvement. Well we look forward to sharing our next episode of BJD Talks, and in the meantime, please do let us know if there's any hot topics in dermatology that you reckon that we should discuss. You can reach us via at BRJDermatol on Twitter and at Brj Dermatology on Instagram, or by using the hashtag hashtag BJDTalks. Uh, I just want to thank both my guests here today, Karen Layfield and Bert Normandz. It's been a pleasure to speak to you both. Thank you for giving uh us the time, and bye for now.