It's All About Us - Taking Lived Experience into Account

00:00:00: Diabetes Insights, Breakthroughs and Innovators.

00:00:04: The EASD TV podcast

00:00:07: from the

00:00:07: annual meeting of the European Association for the Study of Diabetes

00:00:12: Hello!

00:00:13: And welcome back to EASdTV.

00:00:16: So I've always worked a great deal with patient groups but their voices have not been heard as loudly as they are now.

00:00:27: Five years ago, we probably wouldn't have included patients with their lived experience and the rich knowledge of what is needed in terms of caring for people living with diabetes.

00:00:41: Now they're an essential part of the EASD experience.

00:00:45: so I'm delighted to have with me the stars of DDoC Bastion Huck and Renzo Slibbila.

00:00:54: I mean, that's true isn't it?

00:00:55: Five years ago Renzo we wouldn't have had patients here.

00:00:59: Absolutely!

00:01:00: It was very rare to see people with diabetes at these conferences unless they had been brought along often by perhaps a farmer or a med tech group um...to have people hear.

00:01:13: but often they weren't actually allowed to be in the sessions.

00:01:18: So they were sort of brought for a little side event, that was a bit nice and that was great!

00:01:21: They were really good opportunities for people to network and get to know each other but perhaps not actually allowed to hear the good stuff and engage with clinicians or researchers.

00:01:32: But this certainly has changed And we're seeing some significant changes these days.

00:01:39: You used to see patients as a petting zoo.

00:01:44: That's a lovely way to think about it.

00:01:48: Window dressing?

00:01:49: Yes,

00:01:49: window

00:01:50: dressing and

00:01:50: now there is really different experience.

00:01:53: so Bastina A big change that Shantan Mathieu introduced was this idea of having DDoC representatives on EASD guidelines.

00:02:04: I mean thats the major step forward you've had a year with that has been working out.

00:02:09: It's been really great.

00:02:10: I mean, as you said five years ago We wouldn't have even been here did a cracked open that window.

00:02:14: we made sure that diabetes people living with diabetes with lived experience are at the center of many Of these conversations and now also we have deduct voices who are participating in Research or doing their own research projects?

00:02:29: And that's how year-and-a-half ago EISD engine time material approach doesn't set about.

00:02:34: We have the lived experience included not only with your symposium,

00:02:38: etc.,

00:02:38: at The Congress but throughout the year when we develop the guidelines that really matter.

00:02:43: And we had two DDoC voices on two different EASD Guidelines currently in development... ...the first EAS-D guideline is being presented… Is it on Wednesday?

00:02:53: I think so!

00:02:54: It's this week yes –

00:02:55: without distress

00:02:58: Yes and then there was one on type II and CGM use, where we had two of our TAP-II DDoP voices participate in developing this.

00:03:07: And is there anything that you can think off the specifics?

00:03:10: That if a patient hadn't been part it would have been different

00:03:15: Definitely!

00:03:15: We've got about four hundred alumni from our scholarship programme across the world now... ...in more than one hundred countries.

00:03:21: Of course for EASD we focus mostly on ones in Europe But we also have Type I, Type II, Lada, Modi Type F, as we call them.

00:03:29: The carers the partners mothers and fathers.

00:03:32: so Whatever the topic may be that ESD wants to work on We are very well suited to find these two individuals That will contribute to that in a very meaningful way.

00:03:43: And I also noticed that Diabetes now has patient voices.

00:03:49: How important is that?

00:03:51: It's important, but it also...it's brilliant really.

00:03:54: so the last two years The Diabetologia Edition That has coincided with EASD Has featured stories from people With lived experience.

00:04:03: Last year there was a technology focus This year another lived-experience Focus and the thing I love about it Is its people From across the globe.

00:04:11: So they're very different perspectives.

00:04:13: They are united by living with diabetes And what that means.

00:04:17: But there are different considerations depending where you are around the world.

00:04:20: Living with diabetes looks different, stigma looks different technology use looks different and so to have those stories shared in a professional journal is so important because it just means that their story's being heard they're been seen alongside research on the latest its being developed and shared And bringing back in this all about us.

00:04:44: It's all about the people with diabetes.

00:04:46: We are always some most important people in the room and, you know, DDoC lives under the banner of nothing-about us without us... And I feel like we're seeing that it is a recurring theme where we actually see that lived experience being centred because there has to be!

00:05:02: So what on your agenda for this week?

00:05:05: This very

00:05:07: busy

00:05:07: week?!

00:05:07: As always as we will have our DDoK voices they currently flying from all over Europe they will be participating in the symposia and the sessions.

00:05:16: The most important thing for us is of course, the DDoC symposium where we turn things a hundred eighty degrees around.

00:05:22: so there would before our DDoK voice actually presenting on how the lived experience is transforming diabetes care?

00:05:29: And that's what I mean when you say want to make sure that lived experience center stage at everything being discussed on diabetes care therapy policy treatment.

00:05:41: So it not just We bring them here so that they learn and take it back home.

00:05:45: I think its a meaningful contribution to the EISD program overall, And two of the attendees... Of course HCP's and nurses are attending.

00:05:53: They have contact with patients all the time.

00:05:55: But some researchers, some pharma-medtech representatives Are far detached sometimes from reality on ground.

00:06:02: The reality people with diabetes live in So many different parts of the world.

00:06:07: Being able to bring these perspectives To EISDS we had DDoC symposia with six hundred eight-hundred people in the room.

00:06:15: So it does really make a difference, there's interest and I love to see how that has really transformed genuinely.

00:06:22: as I said at the beginning It was a bit like a petting zoo or a fig leaf act enterprise exercise five ten years ago.

00:06:29: now we have a lot of research associations Publications farm and metal companies come to us and really ask can you help us?

00:06:38: Can you contribute?

00:06:39: can somebody from your community of four hundred alumni around the world help us see what we may not see.

00:06:47: And this is really...

00:06:49: I think they've finally realized that if patients are involved, there's a patient pull it helps their products and make better products than if patients like them then want to use them.

00:07:04: Better research?

00:07:05: And

00:07:06: better trials!

00:07:07: There actually an assault on diabetes care, particularly in the US.

00:07:14: And that must be a big concern to you?

00:07:15: I

00:07:16: think we are always very conscious about what access looks like for people globally and again just as with other parts of Diabetes Care it is different.

00:07:27: wherever you are We're very mindful that people feel vulnerable being able support people through Diabetes through DDoC.

00:07:36: It's an incredible network where people do come together to ask how are you navigating this current situation, whatever that might be.

00:07:44: So it might be whether it'd been Australia and something very relevant for people in Australia.

00:07:50: our community there is huge you know, carry in collaborative and we see that globally.

00:07:57: So DDoC has sort of this overarching role I guess as a global organisation to connect people and provide pathways for people find your people uh...and lean on each other And thats always really important.

00:08:12: with diabetes We know the value of peer support.

00:08:14: It's life changing but it is also lifesaving In different ways.

00:08:24: that his big concern is about extremes of temperature, because when you have extreme temperatures people are not able to exercise.

00:08:33: I mean who wants to exercise even with indoor air conditioning?

00:08:38: When it's fifty degrees and actually that extremes the temperature?

00:08:47: That's certainly an issue that people with diabetes obviously are living with and finding ways around it.

00:08:52: You know, how do we manage that?

00:08:53: How do we managed to exercise?

00:08:55: How did we manage keep our insulin at the right temperature?

00:08:57: all of these sorts often user solved I guess problems... We see that!

00:09:05: We know that the Diabetes community is incredibly brilliant at finding solutions in finding ways.

00:09:11: And why do you know that?

00:09:12: because we're living Here's something that has worked for me as a person living with the condition.

00:09:19: Let's see if it is something that can work for you or we can adapt to it, to work for

00:09:23: You.".

00:09:23: That lived experience.

00:09:25: nobody else could do that and I actually think probably one of those really big shifts that GDOC have been instrumental in shifting is getting across that lived experiences expertise.

00:09:37: when you've got people who are researchers and clinicians they will always be experts.

00:09:42: then there would that token sort of person with diabetes.

00:09:46: but now their expertise is being valued and it's on par.

00:09:50: No one can do what we're doing, no-one can contribute the way that we can when we all come together.

00:09:56: its hugely powerful.

00:09:57: It does give a full three sixty degree vision about what Diabetes is about.

00:10:02: Well more power to you.

00:10:04: I think You did magnificent job And i think The way that your been so determined And you've had some great advocates within ESD, and it's been magnificent.

00:10:16: So have a great week!

00:10:18: Hope its very successful for you.

00:10:20: Thank You Very Much.

00:10:24: Go

00:10:34: ahead and hit subscribe, And you'll always stay up to date with the latest in diabetes research & discoveries.