Podcast – Patient & Public Involvement in Biomedical Research

Voice Over:

Welcome to the NIHR Dementia Researcher podcast brought to you by dementiaresearcher.nihr.ac.uk in association with Alzheimer’s Research UK and Alzheimer’s Society, supporting early career dementia researchers across the world.

Megan Calvert-O’Hare:

Hello and welcome to another podcast brought to you by the NIHR Dementia Researcher website. My name is Megan O’Hare and I am delighted to be hosting this podcast today, but I’d like to be a bit cheeky and take a few minutes to do some shameless promotion about our website, demetiasearcher.nihr.ac.uk. We add new content every day, blogs discussing people’s research and their careers, a full dementia and research events planner, details of all upcoming funding opportunities and lots more. So, register today and you’ll get a short weekly news roundup email each Friday. It doesn’t matter if you’re in the UK or elsewhere in the world, as there is something there for everyone.

Megan Calvert-O’Hare:

So, back to the podcast, we’ve previously discussed the importance of PPI, patient and public involvement, and I think we can all agree that it adds value to research, is of benefit to all who participate, researchers, people living with dementia and their carers and basically it’s generally an initiative to encourage.

Megan Calvert-O’Hare:

But today we’re going to look at it a slightly different angle and discuss PPI in biomedical research. So, PPI is often associated with clinical trials and social care research, but there is a growing trend of involving patients and public and more lab-based projects. So, I’d like to welcome our panel today. We have Claire Lancaster, Martina Bocchetta and Lindsey Sinclair. And I should also just add at this moment that we’ve got Lindsey Sinclair joining us on Skype. This is a very exciting moment for our podcast. We’re trying something new. So, excuse the level slightly, although Patrick, our wonderful AV guy, is doing a really good job at doing the level. So, let’s start with some round table introduction. Maybe Lindsey, we can start with you.

Dr Lindsey Sinclair:

So, my name is Dr. Lindsey Sinclair and I’m a clinical research fellow in psychiatry at the University of Bristol. What that means is that I spend about half of my time seeing patients and the other half of my time in the lab doing a variety of different research projects. My main research interest is in the complicated relationship between depression and dementia.

Megan Calvert-O’Hare:

Okay, great. Thank you. Martina.

Dr Martina Bocchetta:

Hello, my name is Martina Bocchetta and I’m a senior research fellow working at the Dementia Research Centre, UCL. My work focuses on detecting changes in brain structures using neuroimaging in the different forms of frontotemporal dementia. I have literally just started an Alzheimer’s Society Fellowship looking at how these changes occur in the earliest stages in the genetic forms of FTD.

Megan Calvert-O’Hare:

Okay, great. Thank you. And Claire.

Dr Claire Lancaster:

My name’s Claire Lancaster. I’m a postdoctoral researcher at the University of Oxford. So, I’m a psychologist by background. My research has looked at genetic risk factors for dementia early in the lifespan. I now work on a digital phenotyping project where we try and design smartphone-based tasks to help us pick up the first cognitive symptoms of dementia. And I’m just about to start an Alzheimer’s Society Fellowship.

Megan Calvert-O’Hare:

Congratulations. So, hopefully all of you have got first-hand experience of using PPI when you’re writing your grants or in your research. Could you tell us a bit more about your experiences?

Dr Martina Bocchetta:

So, I tend to look at brain scans rather than interacting with patients. We have a fantastic group at the DRC who recruit participant. My first direct experience with PPI was when I was writing my proposal for the Alzheimer’s Society Fellowship. So, I really want to improve the project and I want to get it right.

Dr Martina Bocchetta:

So, I thought that by trying to get feedback from the patient and carers would be a great idea to improve it. So, I asked my supervisor at our centre to help me to get in contact with patients and participant. So, I had the opportunity to discuss my proposal with three fantastic volunteers who read and gave me lots of feedbacks. So, that was really very helpful for me.

Megan Calvert-O’Hare:

Did those volunteers then go on to be part of your study or they were completely separate to the study?

Dr Martina Bocchetta:

They were separate, they were involved in other studies at the Manchester Centre.

Megan Calvert-O’Hare:

Okay. And they weren’t recommended to you from the Alzheimer’s Society network, that was through your own centre?

Dr Martina Bocchetta:

Yeah.

Megan Calvert-O’Hare:

Okay. Claire.

Dr Claire Lancaster:

So, I’ve done quite a lot of PPI work. So, on my postdoctoral work at the moment, where we build the smartphone based tasks, we do iterative PPI where we bring people in from a range of backgrounds and they actually help us design the tasks. And because this is really important because they’re remote tools. So, for instance, one of our tasks ask people to swipe and it’s only when we did PPI that we realised that not everybody knew what a smartphone swipe was and that we had to include a little video. So, it’s really important for us fine tuning our research design.

Dr Claire Lancaster:

And on my more recent grant proposal, which is more neuroimaging pharmacological work, I visited some of the Alzheimer’s Society Memory Cafes and carer groups, to get their input on the research protocol and the issues and concerns they might have about the research I was completing and whether it was important to them and whether they thought it had a potential to help people or not.

Megan Calvert-O’Hare:

Lindsey.

Dr Lindsey Sinclair:

So, my first formal involvement was during the writing of my Alzheimer’s Society Junior Fellowship application, which I started three weeks ago. And I asked the Alzheimer’s Society Lay Network to give me some feedback on my application because they have this super handy scheme, where if you’re organised enough, you can send in your application in advance and get some comments on it. And that was really, really helpful for thinking about my dissemination plans and the phrasing, but particularly the lay summary of my project.

Dr Lindsey Sinclair:

And I had tried to organise things more locally before my application went in, but as so often happens, it all happened afterwards. So, I went to talk to a local PPI group about my project two weeks ago, which was really interesting experience because I spoke to them just after somebody doing a clinical trial. And it was obvious that there was a difference between how the group received the information and discussion about the clinical trial versus my much more biomedical project. I would also add that because I’ve seen so many patients over the years, I’ve heard lots and lots of patient views about research, but that wasn’t really formal PPI.

Megan Calvert-O’Hare:

So, when you say biomedical in your context, you said you are looking at the link between depression and dementia. So, are you actually lab-based with pipettes and?

Dr Lindsey Sinclair:

Yeah.

Megan Calvert-O’Hare:

Okay. And so, something I was reading about when I was looking at involving PPI involvement in biomedical research was actually bringing people into a lab. Has anyone got any experience of that?

Dr Lindsey Sinclair:

So, our Brain Bank, the Southwest Dementia Brain Bank campus in Bristol has a series of tools that we do, essentially, when our Brain Bank technicians have enough time. So, we’ve had members of the public in, we’ve had the mayor of Bristol in, before now, healthcare professionals. And generally, people go away just really impressed by the work that we’re doing, but also just by the two pots that we have with the normal brain and the Alzheimer’s affected brain, that seems to speak to people on a very visceral level about exactly what this disease is and how much of a brain disorder it is.

Megan Calvert-O’Hare:

After that, I wonder, does interest in taking part in research go up, do you think? Do you think people are more keen once they actually see it for themselves?

Dr Lindsey Sinclair:

I think so, but I don’t have any direct evidence.

Megan Calvert-O’Hare:

Fair enough. Martina and Claire, you both actually have done neuroimaging, are currently doing neuro imaging. So, is that more of a diagnostic tool than a treatment plan?

Dr Martina Bocchetta:

Can be both. So, what I’m currently doing now is trying to identify the changes at the very early stages. So, it’s trying to see whether we can predict the development of some sort of dementia, in a way.

Megan Calvert-O’Hare:

Because, I guess, the thing with why PPI is important in clinical trials is that it will really very much impact people’s lives. So, you want to have a say in it, you want to talk about the safety of the drug and how these trials are run. But when you’re looking at very early in diagnostic, that can be a removal for people, they’re not directly going to benefit from this. Have you had anyone comment on that or are they just as keen to be involved?

Dr Martina Bocchetta:

They are really keen to be involved. So, the aim of my project will be to develop markers that may be useful in clinical trials to have a measurable index for seeing whether a drug is working or not. So, people are really keen in having something that we can use for clinical trial and see whether drugs are working or not.

Megan Calvert-O’Hare:

Mm-hmm (affirmative). And Claire, you said you did neuroimaging or doing it now?

Dr Claire Lancaster:

I’m about to start doing neuroimaging, but now I found people were still really engaged with the research, even if it was just looking at risk markers early in life. People really understand the importance of early life prevention and intervention, and so they were still really happy to engage with the ideas, I think.

Megan Calvert-O’Hare:

Did you say you sent your grant to them to review in a way?

Dr Claire Lancaster:

I did, so like Lindsey, I contacted the lay review group at Alzheimer’s Society and got some really helpful feedback. And I also took my proposal to the Memory Cafes in Oxford. So, giving people a chance to review the proposal and give their feedback was really useful.

Megan Calvert-O’Hare:

And you actually use the input?

Dr Claire Lancaster:

Yeah, yeah, definitely. So, some of the key things that came up, because I’m giving a drug to healthy people in my fellowship, and some of their advice on how to present the information and what concerns people would have and what kind of questions they’d have, were really, really useful.

Megan Calvert-O’Hare:

Okay. And I think, Lindsey, you said, you also have got people involved in the other end of it, so the dissemination, is that right?

Dr Lindsey Sinclair:

Yeah. So, when I went to talk to our local public patient advisory group, I was trying to get their views on, essentially, dissemination because I thought that was probably one of the weaker bits of my research plan, because we all know about doing press releases and publications and all that kind of thing. But I wanted to try and do something a bit more inventive that would actually enable the public to find out a bit more. But I think the overall feedback from the group was that they were more interested in the details of my project at this stage and that they’d prefer me to come back and talk about dissemination later on. So, when I was back from maternity leave, they’d invited me back.

Megan Calvert-O’Hare:

Okay. We should also say Lindsey is on Skype because she’s very, very much pregnant, and in fact, when this is released, she hopefully will have had the baby, so. So, the dissemination would be part the way through, you wouldn’t wait until the end? They don’t want you to come back with a report and then … Do you see what I mean? It’s more, they just wanted to get the details at the beginning and then part the way through the project to go back.

Dr Lindsey Sinclair:

Yeah.

Megan Calvert-O’Hare:

Okay. Okay. So, is it an easy relationship working with people outside of your field of work? That question has come across as incredibly arrogant. I didn’t mean it to be like that. But in fact, Claire, you talked as if the PPI was actually giving you a lot more input and almost, in a way, education about how clinical trials work, is that how you found it to be?

Dr Claire Lancaster:

Yeah. I think it’s definitely super useful to speak to people outside of your field of work, because it can be quite easy to get stuck in a little research bubble. And you only talk to people who also working in the area or have a direct relationship with the area. So, getting a wider range of inputs is really important, especially if you’re going to be trying to recruit people to take part in your studies, from a wide range of backgrounds. So, getting their input is very educational. Yeah. A lot to learn.

Megan Calvert-O’Hare:

And Martina, have you found a similar thing?

Dr Martina Bocchetta:

Absolutely.

Megan Calvert-O’Hare:

Did you find you had to, in a way there’s a bit of back and forth education, isn’t it? You talk about your project [inaudible 00:13:20].

Dr Martina Bocchetta:

It’s a two-way communication for sure and what it helped me understand was the idea that you need to change your perspective, in a way. So, you need to move from thinking about the details of the project, to more of an overall and global goal. And what it also taught me was the ability to think outside the box, so for instance, while I was writing my proposal, I was being very structure and very formal and very scientific, in a way. And then the feedback that I received from people who were reading my proposal were, “Why don’t you add colours? Why don’t you add boxes or figure?” And my first reaction was, “No, that’s wrong. You cannot do that in science.” But actually, when I submitted the proposal, all the reviewer were like, “Oh, that’s good. That’s a great idea. It’s more helpful, in a way.” So, that was really important.

Megan Calvert-O’Hare:

And that’s not just the lay summary, that was the whole output?

Dr Martina Bocchetta:

The whole, yeah.

Megan Calvert-O’Hare:

Oh, wow. Okay. That’s a really useful tip, everyone. So, what strategies or other strategies could be used to implement PPI and decision making on biomedical research, do you think?

Dr Martina Bocchetta:

Maybe adding questionnaire or really ask the patient and participant how they will feel like to contribute? What do they think they can help to help them to be heard and to have their saying.

Megan Calvert-O’Hare:

And you said you got yours through your centre, is that right?

Dr Martina Bocchetta:

Yeah.

Megan Calvert-O’Hare:

But, Claire, you used the Alzheimer’s Society Network?

Dr Claire Lancaster:

Yeah.

Megan Calvert-O’Hare:

And I think, Lindsey, did you say a similar thing? Yeah. I that’s quite big, isn’t it? The Alzheimer’s Society Network, but it’s good that you were able to-

Dr Martina Bocchetta:

I should mention that I also asked the Alzheimer’s Society via their development grant application. Yeah.

Megan Calvert-O’Hare:

Good. Okay. So, what challenges have you found with doing it? I mean, we’ve talked very positively and it is a very positive thing, but have there been any challenges with involving the patient and public in your research design?

Dr Martina Bocchetta:

So, for me, the main challenge was language. So, I’m not an English native speaker, as you may have noticed. So, the odd thing for me is that everyone was telling me, “You need to try to explain everything in simple term. You need to avoid the jargon.” While, for me, because I learned English from a very scientific background while I was working in Italy. So, for me, trying to find another way to express a term was really difficult. So, for me, atrophy was the only way to mean loss of volume. So, for me, that was really difficult. So, it was the interaction with the general population that helped me to understand which other way I could express a term or a concept.

Megan Calvert-O’Hare:

Okay. Claire.

Dr Claire Lancaster:

So, I guess, one of the main challenges I found was making sure that I gave people enough time and information to digest the research ideas, to then be able to comment on it effectively. And I think another challenge we face quite a lot in the digital phenotyping project, is a lot of PPI is done in panel discussions and it’s quite hard to interact with multiple people at once, if you want them to try out something, say on their smartphone, and watch. So, we found that organising face-to-face, one-on-one sessions was much more helpful, but actually setting that up was quite challenging, because it’s a little bit different.

Megan Calvert-O’Hare:

Yeah. Because that was in preparation to write a grant, so that’s obviously … When were you doing that in your other job or?

Dr Claire Lancaster:

Yeah, so this is my current work and that’s been going on for the last three years. So, we do PPI quite regularly in that role.

Megan Calvert-O’Hare:

Okay. So, this wasn’t in preparation for the grant, it was an extra on top of-

Dr Claire Lancaster:

Mm-hmm (affirmative).

Megan Calvert-O’Hare:

Okay. And Lindsey.

Dr Lindsey Sinclair:

So, I would say that the main challenge is that my fellowship is part epidemiology and part lab-based work. So, it’s a really long way away from the clinical trials that PPI groups would normally comment on. So, I think, because it was so different, it took them a little while to get their heads around it, which is fine and maybe I could have explained this a bit better, but also they just seemed a bit less interested in it, than clinical trials. I suspect, maybe, because it wasn’t going to affect them so directly or if they weren’t sure what input they could provide. So, I definitely got the feeling that they were less engaged with what I was talking to them about, than they have been with the questionnaire design that they were helping with just before I started talking to them.

Megan Calvert-O’Hare:

Had you taken these people on the tour of the lab or this was separate to doing?

Dr Lindsey Sinclair:

No. So, this is a separate PPI group that’s been set up specifically by their memory research group, ReMemBer group, at the University of Bristol. So, most of what they do is clinical trials and the occasional bit of epidemiology. So, I suspect mine was the first lab-based project that they’d ever heard about.

Megan Calvert-O’Hare:

I think, we’ve covered some top tips, but do you have any other top tips for ECR, especially lab-based ones? I guess, Lindsey, you’ve talked about the challenges, but also that could be used positively, you take them on a lab tour, maybe that would really start to engage with biomedical science. Have you got any other top tips for ECRs, Martina?

Dr Martina Bocchetta:

So, for me, it would be to be prepared. So, there are lots of very well-made workshop, for instance, some organised by NIHR, which are about involvement patient and participant into research. They are very good and they give you lots of tips and there is also a website called [Involved 00:19:18] with lots of information about which term to use and how to organise different activities.

Megan Calvert-O’Hare:

Okay. Claire.

Dr Claire Lancaster:

I guess, I’d say start early. So, the sooner you can get people involved in your research design, the sooner you can take their feedback on board and also try and think outside the box slightly. So, I think it’s really important to include people from different backgrounds in your research and that, possibly, involves thinking outside of the NHS PPI panels and thinking about more diverse audiences who might be interested.

Megan Calvert-O’Hare:

I guess, because we talked a little bit about you’ve all used the Alzheimer’s Society Network, in a way that’s quite a chosen population in itself, that’s people already engaged, wanting … But, I mean, this is always the challenge, isn’t it? How do you engage people who don’t want to be engaged or find them or reach out? So, I guess, yeah, if you leave enough time and make enough contacts, maybe you can diversify who you’re asking. Do you find, Lindsey, that you could maybe use your clinical half of your job to fulfil that criteria of diversity?

Dr Lindsey Sinclair:

So, I always talk to my clinical colleagues about my research and usually they’re polite enough to at least feign interest and give me some comments. I suppose, because a lot the time, being an [inaudible 00:20:46] psychiatrist, you go and see people in care homes who have behavioural problems or people who are very depressed. It can be quite hard because you need to maintain a focus on why they’re coming to see you. But, definitely, if it was appropriate, then I would look at doing that.

Dr Lindsey Sinclair:

I would agree with Claire about starting early, by the way, because I looked at lots of different sources of PPI and the first group I looked at only met twice a year. So, you definitely have to allow time and look at lots of different places where you can get PPI advice from. And now I know where to look, there’s lots of really good things at University of Bristol, and I’ve even got a video that I would like to shamelessly hawk from a Health Improvement Team, the HIT team, which is talking about getting involved in dementia research. So, there’s lots of fab stuff going on, you just need time to find out about it and how to get involved.

Megan Calvert-O’Hare:

Okay. Well, share whatever you have, so that then we can share to other people, that would be great. Is that specifically in Bristol or is that nationwide?

Dr Lindsey Sinclair:

It’s fairly generic, but it’s specifically for Bristol.

Megan Calvert-O’Hare:

Okay, great. Well, thank you all for today. This has been really interesting. I’d like to thank our panellists, Claire, Martina and Lindsey on Skype. And if you have anything you’d like to add on this topic, please do post your comments in the forum, on our website, or drop us a line on Twitter using #ECRDementia. We have profiles on all today’s panellists on our website, and hopefully we’ll find the link to Lindsey’s video and all the resources that you have. And finally, please remember to subscribe and leave a review on this podcast through iTunes, Spotify, and SoundCloud. Thank you.

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Brought to you by dementiaresearcher.nihr.ac.uk. In association with Alzheimer’s Research UK and Alzheimer’s Society, supporting early career dementia researchers across the world.

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