Episode 19 – Digital Geniuses

Ep 19

Introduction: Research is not just for professors. People like you and I are a vital part of the process. Inflammatory with Debbie Wilson and Katy Pieris. Navigating life with inflammatory arthritis.

Debbie: Hello, and welcome to Inflammatory with Debbie

Katy and Katy.

Debbie: We do have at the moment an urgent appeal for donations. I hate asking, but unfortunately, this podcast and the charity really does need donations. We are applying for grants and fundings and partnerships, but that takes a bit of time. So, we do want to keep the podcast going weekly until the end of July when we’re going to have a natural break in August anyway for the summer holidays. We are volunteers and we have children, so sometimes they take a bit of a priority. But we really do want to keep this going. So, there’s a link again in the show notes and it’ll be on our website and through JustGiving. So please, any donation would be really helpful. And we’re all volunteers, the money will go directly to our cause.

Debbie: How are you today, Katy?

Katy: I’m pretty exhausted this week. There has been a hell of a lot going on. I’ve played four games of tennis in five days.

Debbie: Wow.

Katy: And yesterday was just a bit of a marathon day. I went to the office, I went to a work event. Then we had our event, didn’t we?

Debbie: We did. We had our first online event, and it was so nice to actually see people of our community. It was really nice. We would kind of let them know what the charity is all about and then just feedback as well was really useful. Some people have listened to the podcast, some hadn’t, but it was good to kind of get to know what they would want to hear in future topics for us to discuss. Yeah, it was just so lovely.

Katy: No, it was really lovely. And my favourite thing is that one of our listeners, her and her husband listened to our episodes as they’re driving in their car, which is incredible because it lets him have a little bit of an insight into her life and kind of understanding the diseases so that it’s not always you having to talk about it. Because I know I’ve always struggled talking about it. You wouldn’t think that with the last 19 weeks, but I do.

Debbie: Yeah. Well, same here as well. And I think, because I do know my family listened to the podcast and what they’ve learned about me is something that they would never have learned before because I would never have said it.

Katy: My parents still haven’t managed to listen because they don’t really know what a podcast is. But anyway, we’ll move on.

Debbie: We’ll get to them at some point. So yes. But anyway, getting on to today, we’re going to be talking about research and how that’s impacted our lives with inflammatory arthritis. Katy, have you been involved in any research recently?

Katy: I have. Yeah, I’ve been involved in a few different things. And I guess, to be honest, when I used to think about research, I probably mixed it up a little bit with medical trials.

Debbie: My thought was always the clinical trial side. Yeah. What else is there really? But there is so much more.

Katy: Yeah. Yeah. So, I’ve been involved in some projects around sort of movement. And this one was specific to rheumatoid arthritis. I’ve also taken part in multiple sort of surveys. There was one by one of the top universities looking at how you live day to day life with inflammatory arthritis. But equally as well, they put that survey out to the general public to then compare results between those with inflammatory arthritis and people in the general public, how you feel day to day, what you can do day to day and kind of looking at a snapshot, I guess, in your life. Then I’ve also been involved previously in sort of focus groups. There was something I went to when I was about, I think, eight months pregnant. And that was all around parenting. And it was very much focused on inflammatory arthritis. And that was actually the first time I met anyone with Axial SpA. I won’t say the long version because I can’t. And yeah, so bits and bobs and of different sort of lengths, whether it’s kind of actually going somewhere, whether it’s just filling in a survey, or whether it’s a bit of a mix of kind of focus groups and surveys, or actually, you know, being sort of more involved.

Debbie: Yeah. So, there’s so much research that can be done and how people can be involved. And what we’re trying to do as a charity is to really highlight the best practice of PPIE. And most people don’t know what PPIE means. So, PPIE is the active involvement of patients, but also carers and families, they can be involved in the research, and just members of the public in shaping and really being a part of that research, whether it is, as you say, surveys, designing study materials, or being a member on the research committee. But then the engagement side is that sharing of that information and the results, which I think is so, so important that if anyone with inflammatory arthritis is involved in that research, they should be able to access it. And having them behind some paywall, that really drives me mad. I must admit, when I was kind of first involved in the research side, because obviously, when my daughter was diagnosed, they’re like, oh, you need to go into the research bit, there’ll be so much for them to kind of look at you. And I was like, okay, that sounds very like testing DNA, very medical sort of side. But it really wasn’t. And when I went to my first research event, there were so many researchers. And for a disease, because I have JIA, the disease that I’ve had as a child, I never knew how much research and how much people cared about trying to find out the reasons why, the best treatments and just the best care for people living with it. It was really, really eye opening. And I think if anyone has that opportunity to get involved in research, please do because you’re really helping the next generation coming through.

And I’ve worked with some children who were just so articulate and they’re just so direct. I don’t know if you’ve worked with children before, but they are so direct and they know exactly what works, what doesn’t and what should happen next as well. So, that side has been really insightful.

And I have been part of lots of research groups. I sit on the JIA biologic steering group, which if you’re on a biologic medication, even for rheumatoid arthritis, I think psoriatic arthritis as well, there’s different registers and they collect your data. And it’s really useful to know more longitudinal what will happen for people.

Because I think once you get diagnosed and if you go on a medicate or any type of medication, you want to know what the long-term effects are. And these registers can give that information. So, it is vital.

Katy: And if you’re not on any of these registers, please ask your team. Yeah. So, how did you get on those registers? Because I’m not on any of them and I’d never heard of them until you’ve mentioned them.

Debbie: Yeah, it was just through one of my work, when I worked for another charity, because I was then doing some work because they are mainly based in Manchester University. I just had a chat with some people there and they’re like, oh, you know, come along and come be part of the steering group as a member of lived experience. Because again, it is not just, again, it’s that part of the research side, which not many people realise that you can just be on research committees or steering groups. Having that voice of that lived experience is so, so vital. And then when you then go and see people and meet researchers, because some are obviously in clinic and others aren’t. Ones that aren’t have never, might not have ever seen anyone living with inflammatory arthritis. And when you go and talk to them about their research and how you live with it, you can just see their eyes just going, wow, I didn’t know this about this disease. And it really helps bring their research to life and know that it can make such an impact on people. So, for me, that has been the best part of research, but there are lots of other ways as well. Digital apps, that’s a new thing that’s coming out as well. And I think, have you been involved in some of them?

Katy: Yeah, I was involved with one in the pandemic. I was part of, I think, kind of testing it, seeing how it worked day to day, giving them some guidance of the type of information I’d like to see on there. I know they developed some sort of digital groups off the back of it. So yeah, that was quite interesting, actually. And again, something I wouldn’t think was part of the whole research piece.

Debbie: Yeah, no, there’s so many new digital apps coming out. And obviously they need to know whether it works for their objectives of helping people with inflammatory arthritis. And I think there’s a lot more coming out as well. We don’t want to be bombarded with apps, but some of them can be really helpful.

Katy: Yeah, because that was my thing for me with an app. I found it was only when I was having an issue, I would use it.

I wasn’t using it sort of day to day. So, it’s that, how do you keep people engaged with something like that?

Debbie: Because I suppose you don’t want to be reminded daily that you have this, especially when you kind of look and feel okay. Yeah. It is a tough one, but it’d be really useful to kind of then chat with people, you know, looking at them and actually how do they keep them people engaged all the time.

Katy: Yeah, because the idea of the one I tested was that actually it would connect with your medical team in the hospital. And then it gave the hospital the opportunity to sort of understand between appointments exactly what was happening to the patient and how they were feeling day to day. But again, that only works if you’re going to input that information to feedback to them. So, it’s always that sort of chicken and egg. If you don’t have this bit, this bit doesn’t actually work, and it doesn’t follow through.

Debbie: Yeah. Because getting back to your appointment last week, Katy, with your nurse. Yeah. I heard a few things digital-wise. How did it go?

Katy: Oh yes. Oh yeah. Forgot. Completely forgot. Yeah. So, it was very funny because we’d been talking only a couple of days before about how your hospital connects all the information. You can see all the information. Then I turn up to my appointment and there’s these like digital geniuses in t-shirts. That isn’t what they were called. They had t-shirts with the new system plastered all over them. And I was like, oh, I sent you a picture, didn’t I, of the poster?

Debbie: You did, yes.

Katy: And saying, is this what you’ve got? And I got quite excited to be honest. I was the first appointment, I think. And my poor old nurse, bless her, she couldn’t actually use the system because she opened it up and then she couldn’t find where the notes were. Because I think when they’ve done all the training and everything like that, it wasn’t a training issue. It’s just when you’re live in a system, it’s so different to when you do a training where you haven’t got your firewalls or I don’t know, everything. So, these digital geniuses had to come in and let’s weren’t that genius because they’ve gone paperless. She also didn’t have any paper to write anything down on. So, I mean, I probably shouldn’t share this, but some of my notes were written on a napkin.

Debbie: I think don’t’ that’s GDPR compliant.

Katy: My notes were written on a napkin. Oh my gosh. And my Amazon man’s here. Can I just go and get that? Yes. It did knock a door run, like they all do, but I wasn’t sure. I think it’s for my husband.

So, I thought I’d better get it. Oh, okay. Sorry.

Katy: Where did we finish?

Debbie: Yeah, you wrote on a napkin.

Katy: Oh, yeah. But did you actually see her then putting those notes into the computer system at all? Yeah. So, they did show her a way that wasn’t the actual way, but just a way to write a note on the system. So, I think my notes went on, but then, because this was actually to get my prescription for my biologics. And so, I booked a blood test already, but it’s not until next Tuesday. And so she was saying, Oh, it’d be really good if we could sort a blood test. Could you do one today? And I was like, well, it depends how long it’s going to take. But anyway, she couldn’t print the blood test form off anyway. So, she said, I’ll just leave it as it is.

Debbie: Oh no, she said I have to print one off because that’s where I don’t. It’s all in the system somewhere.

Katy: Yeah, she’s still at it. Oh, wow. I mean, maybe that will come when anyone knows how to use it. But yeah, I must admit, I did feel very sorry for her because it was an awkward position to be in. They said they’d got less appointments for like the next two weeks. So, they’d, because they know things are going to take longer. But awful to be in front of somebody and nothing working. And some people would be dickheads, wouldn’t they? They’d be horrible to these poor people.

Debbie: Well, yeah, I must admit, I think I’ve seen some.

Katy: I just found it hilarious. I was having a great time.

Debbie: I would as well, because, you know, when you work with any kind of tech, it’s going to have days that it just doesn’t want to do anything. And there’s nothing you can do. But I feel so, I would feel so sorry for your nurse. She must have felt so pressured. Yeah. She has other people to look, you know, to look after and everything as well. And then trying to do the tech as well, which, oh, bless her. But yes, well, hopefully your prescription goes through though.

Katy: Yeah, I mean, I’ve got about six weeks supply, so I think I’ll be okay. Oh, okay.

Debbie: Yeah. Well, fingers crossed it all goes through. But yes, it’s, I must admit, you know, getting back to the theme of today, you know, talking about the research and the digital side, which, you know, that’s where the world’s going, looking at AI and apps and everything. This is, I don’t know if you’ve seen, I was watching this thing on TV years and years. It’s really freaky.

Katy: I have not seen that.

Debbie: It was done, I think like 2019, but everything they’ve said about digital side and they kind of had this like SIM embedded in the girl’s hand, and it was just like using it as the phone. It’s really weird.

Katy: Did she do this?

Debbie: She did. She did actually do the phone. I’m actually doing the phone action. Yeah.

Katy: I don’t think you’d need to do that if the SIM was in your hand, would you?

Debbie: Well, that’s where you talk. So otherwise, you just, yeah, just get your pinky out. I’m not really too sure. But anyway, but it was just really weird how tech can go. And I think obviously there are, we have to be quite cautious about it, making sure that everything, especially with our medical records, you know, because this is us and this is what makes us unique as well. And we don’t want that kind of being used in odd ways. I’m not quite sure how to say it, but, you know, we just need to be cautious about it. But I also think we need to be quite excited, I think, to see where research can actually take us with the research going on as well. Because I was, being a statistician years ago, I always used to do lots of risk analysis and looking at all the different risk factors involved. And now they do lots of machine learning where the computer does it all and it’s just like, wow, can I look at your coding? You know, being geeky and everything, but they’re like, well, it’s just all in there. And I was like, oh my gosh, you don’t, they just press buttons and it’s just, anyway. Yeah.

Katy: Yeah. Because it’s just such a time saver.

Debbie: It really is. And it was just so useful to really kind of like in a few seconds to see what genes can be, you know, linked to inflammatory arthritis.

Katy: Yeah. And I think, yeah, because when we had the chat with Rachel, that was amazing. I did not know that there was a specific gene linked to Axial SpA.

Debbie: Yes. Well, I think obviously there’s genes that are linked to other diseases as well, like Alzheimer’s and that. And I think eventually we will get more information about our genes and how our body works about our immune system because it is the most complex system in our body. We still don’t know much about, but there is, I think there’s just so much research that can be done, but then it’s prioritising what should be done to make the most impact.

Katy: What’s best for the patient.

Debbie: Exactly. That’s what it all comes back to. Yes, it really is. And I think this is where that voice of lived experience should really come through. And if you ever get the chance to talk to researchers, you know, talk to them about what your priorities would be, because probably what your priorities would be very similar to other people’s priorities as well, living with IA. And that’s something that they then should take away and kind of look at as well, because obviously that would then have the most impact on us.

Katy: Yeah. No, definitely.

Debbie: There’s also the element of payment as well, because that is the elephant in the room. You are giving up your time and your, it’s your expertise. This is your body. This is what you go through every day. And it is so personal. And sometimes obviously we talk about it, you know, weekly, but other people can find it very hard to talk about, especially then to strangers as well. But you are so valuable and that has to be rewarded because you are just giving so much vital information. But Katy, just thinking for you, what would be your main research priority?

Katy: I think it would be really about enthusing people to be more active and what activity can actually do and understanding sort of a little bit more around what people did prior to diagnosis and post-diagnosis. This is, I mean, I don’t know if this makes sense, but how that impacts, I guess, and I don’t know how anyone would find this out either, how that impacts people’s outcomes, kind of what their lifestyle, their lifestyle choices were pre-diagnosis and then post-diagnosis and looking at what those sort of outcomes look like. And that can be from, I guess, exercise, nutrition, other lifestyle things. Also, one of the things I think would be really interesting is that sort of family history, your genes and how that leads you to sort of getting the same or similar sort of condition, because I know I’ve mentioned before my dad has gout, polymyalgia, rheumatica, but my grandma on the other side had rheumatoid arthritis. My uncle had rheumatoid arthritis and type 1 diabetes. So, there’s obviously, to me, it’s quite clear. And we know kind of your genes have an influence, but it’s not the whole thing because my brother and sister don’t have anything at this point. My sister does have Rynards, which I guess there’s a slight connection. But that’s the area also that I’m quite intrigued by, kind of understanding, is it around nature, nurture, is it your genes or is it your lifestyle that kind of impacts the disease the most and you actually getting the disease? There’s something else I was involved in is the big nationwide research.

It’s not inflammatory arthritis specific and I’ve completely forgotten what it’s called. But there’s a big bus that came to Tesco’s and you went and had loads of little tests. And it’s kind of looking at exactly sort of looking at mapping people’s health across the nation. Your future health. That’s what it’s called. Your future health.

Debbie: Yeah, I’ll put that link in the show notes. But no, that’s really interesting. Because I think for me, obviously, looking at genes and my daughter having it, which is why I didn’t want to have children because I didn’t want them guessing my disease. But treatments have dramatically progressed over the last 20, 30 years. And obviously, that’s down to research. And I just think, great, we have so many more medications.

But my main priority would be, why do some medications work for some and not the others? Why can we not just have, try this one, if it doesn’t work, we know that this one definitely will. And I think that’s trying to get that trial and error, because I think this is where it can be so frustrating for people with inflammatory arthritis. And I think if you’ve just been diagnosed as well, it takes so long for medications to kick in anyway. We know it’s about two to three months. And then if that doesn’t work, it’s then going back to your teams to stay. And I hope your teams never say this, that you failed that medication. You haven’t, you have not failed. The medication just hasn’t worked for you. That’s all they need to say. Nothing you have done.

Katy: The medication has failed for you. I don’t like the word failed, but the medication is the problem. You’re not the problem.

Debbie: Exactly. So just, yeah, so don’t even just get them to say that word. It just means, okay, but there are lots of other medications out there. There’s more out there than there’s ever been. But it is just trying to get that trial and error out because that drives me mad. And I know it drives a lot of people mad as well.

Katy: So, looking ahead, Debbie, what’s new? I’ve heard this term MAPJAG.

Debbie: Well, that’s a new, I think it’s a new-ish research study. When I was a, I still am a cluster champion. We were talking, it’s with mainly Birmingham University, but I think it’s mainly also going worldwide. When you have a joint injection, what they’re trying to do now is take a biopsy of the fluid in the joint to try and give a bit more information about what is going on in that joint to cause the swelling, to cause the pain. And we got it through the ethics committee because also with research, you do have an ethics committee, which are very, very strict. And they were like, parents would not agree with this at all. But we came across as parents ourselves actually was like, well, why wouldn’t we? If you’re going to put a needle into the joint anyway to do the injection, why wouldn’t you want to take out some of that information? Because that can give you so much more details about what’s going on. And so that’s how we got it through the ethics committee. And there’s a video as well that I will put on the show notes and I’ll put on our website as well, giving a bit more information about what they’re doing and why they’re doing it. But I think we haven’t got the full results obviously yet because it’s still quite in the new stage. But trying to get a different way of getting information about what’s going on in the joint, I think that’s really quite exciting. So hopefully we’ll get some of those findings out and know more. We may not, but we may know as well, along with like blood tests as well, which obviously goes along with that. But it’s just new ways of getting information and obviously with AI and everything that can go on behind the scenes to really pick out this information to really hopefully help the next generation.

So, I hope that’s been helpful. As I said, there are so many ways that you can get involved in research. Please do have a look at our websites. I’ve updated our research page that kind of shows you that it isn’t just the clinical trials. It is the focus groups. It’s the surveys. It’s even looking at patient information leaflets. Do they make sense to you or not? Because they have to. They’re there for the patients. And if you don’t understand it, you wouldn’t be the only one. So please kind of just get in touch and say, look, I don’t understand this.

And there is no question, it’s a stupid question in research as well. Because as I say, if you don’t understand it, other people may not as well. So, you can get involved through your teams. You can always ask them when you go to your clinic appointments, what research is there? What can they be involved in? And we also have latest research opportunities on our website as well. So, thank you so much for listening. Please do sign up to our newsletter at our website, inflammatoryarthritis.org. We are on social media. We’re on Facebook, LinkedIn, Blue Sky and Instagram. So please do follow, like and share because it really does help increase our reach. Thank you so much for listening.

And next week is our Q&A session. So, if you have any questions, please do send them in and we love your voice notes. But until next week, it’s goodbye.

Katy: Goodbye.

Urgent appeal for donations to help keep the podcast running until their planned summer break. Donate here https://www.justgiving.com/campaign/inflammatory

Send us your questions for next week’s Q&A session, especially voice notes: https://inflammatoryarthritis.org/contact-us/

In this episode of Inflammatory!, Debbie and Katy firstly reflect on the first Inflammatory Arthritis UK virtual community event, where they connected with the IA community and received helpful feedback on future topics. Katy shares touching moments of how the podcast has helped others, including family members who have a better understand life with IA.

They then explore the vital role of research in improving care for people with inflammatory arthritis (IA). Katy shares her experiences participating in a range of studies, from surveys and focus groups to serving on research committees. The conversation highlights the importance of Public and Patient Involvement and Engagement (PPIE), showing how those with lived experience are essential in shaping research that truly matters.

They discuss being involved in steering groups and helping to design digital health apps, while also reflecting on the real-world challenges of integrating new technology into clinical care, illustrated with a humorous story about handwritten notes on a napkin after a system failure.

The episode also explores exciting areas of current research, including genetics, machine learning, and the MAP-JAG study, which investigates what’s happening inside the joints by analysing biopsy samples from joint injections. Debbie and Katy emphasise how digital innovation and AI could transform diagnosis and treatment, while also urging caution around data privacy and the need for ethical use.

Finally, the hosts encourage listeners to find ways to get involved in research, whether through clinical studies, reviewing patient information, or sharing their voices to guide future priorities.

Resources:

• IAUK Research page: https://inflammatoryarthritis.org/research/
• Link to Map-JAG Study here

🌐 Visit: inflammatoryarthritis.org📱 Follow on: Facebook | Instagram | LinkedIn | BlueSky

Disclaimer: The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content. For more information, head to https://inflammatoryarthritis.org/