Podcast – Alzheimer’s Research UK DEMON Network

Hosted by Piers Kotting

Reading Time: 24 minutes

Today’s topic is the new Alzheimer’s Research UK DEMON Network (don’t worry you don’t have to be an evil spirit or tormentor to join); DEMON being an acronym for Deep Dementia Phenotyping (DEMON) Network. Led by the University of Exeter and supported by Alzheimer’s Research UK, the Alan Turing Institute and Dementias Platform UK. It aims to unite experts from a wide range of fields to find new solutions to research in dementia.

In this podcast, first time host Piers Kotting is with Professor David Llewellyn from the University of Exeter and Dr Carol Routledge, Director of Research from Alzheimer’s Research UK. To discuss what the they hope to achieve through the network and how Early Career Researchers from across all fields and countries, and not only in dementia, can become involved.

We are now hosting a bi-weekly WhatAapp discussion (the week after each new podcast is released) which includes panellists from this podcast. To talk to them, ask questions and to chat about the ‘ARUK DEMON Network’ with the rest of our community join our WhatAapp group.

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Click here to read a full transcript of this podcast

Voice Over:  Welcome to the Dementia Researcher Podcast, brought to you by dementiaresearcher.nihr.ac.uk, a network for early career researchers.

Piers:  Hello, my name is Piers Kotting and I’m delighted and excited to be hosting my first podcast for the National Institute for Health Research dementia researcher website. As this is my first time on the podcast, I thought I should introduce myself, I’ve been working in the National Institute for Health Research for over 10 years; first setting up the Dementia and Neurodegenerative Diseases Network – known as DeNDRoN – and now supporting Professor Martin Rossor in his role as NIHR National Director for Dementia Research. I’m also an honorary associate professor at the University of Exeter and a trustee, a bit of a plug I’m afraid, for a small award winning charity, MyLife films that makes biographical films for people with dementia. So my main interest in this field lie in developing capacity, capability and infrastructure to support the development and delivery of dementia research across the full spectrum of health and social care research as part of this work I have been one of the people behind the creation of the dementia researcher website and the podcasts, along with Adam Smith who takes all the fun stuff making the podcasts and you’ll have heard him making many before. As this is my first time on the podcast I’ll hope you’ll be kind and continue to listen as we’ve got a great topic to discuss. So I’m here in the studio in London today and I’m joined by two fantastic supporters of the podcast and the website to talk about their latest exciting collaboration, the Alzheimer’s Research UK Deep Dementia Phenotyping Network, otherwise known as the DEMON. So I’d like to welcome Professor David Llewellyn from the University of Exeter and Dr Carol Routledge Director of Research at Alzheimer’s Research UK. Hello David and Carol.

Carol / David:  Hiya

Piers:  So Carol’s also first time on the podcast, that’s right isn’t it, Carol?

Carol:  That’s absolutely right, yes, never done one before.

Piers:  And, and David is second or third time? He’s our expert in the room. So perhaps I can ask you to start by introducing yourselves and sharing just little bit about your journey to where you’ve come to in Alzheimer’s research UK, let’s start with Carol.

Carol:  So as you mentioned, I’m the Director of Research at Alzheimer’s Research UK, I’ve been here only just about 3 years but by training I’m a neuroscientist and most of my career has been focussed on neuroscience research a lot of it is actually in pharma both in the US and UK, I’ve spent a period of time in biotech and actually my experience spans all the way from target identification through target validation, drug discovery, translational medicine which is absolutely my favourite part which is all associated with taking the learnings from pre-clinical science and moving into humans for the first time. All the way to the end of phase 3. Neuroscience used to include neurology and psychiatry but more recently, as in 10 years ago, it was split into psychiatry and neurology, so I kind of flit between the two. I’ve worked on small molecules and biopharma and my last role prior to leaving pharma was in biopharmaceutical division where I was developing therapeutic antibodies for various different treatments actually, and that was at GSK so I left GSK and joined the Dementia Discovery Fund when it was at its inception, stayed there for a couple of years and then actually came to ARUK about three years ago.

Piers:  Fantastic, thanks Carol. David?

David:  Well that seems fantastically clear, I don’t know exactly how I’ve ended up here. [Laughing]

David:  So, I’ve always been interested in the brain. I think, I think that’s the only common thread really that’s brought me here, I don’t really know why I decided to do dementia research, that was about 13/14 years ago. Before that I was teaching in Leeds, but I decided to make the jump and go to the University of Cambridge where I was Psychiatry and the Institute of Public Health and I trained there in Data Science and Public Health and Epidemiology and they really got me into using and playing with data and then 10 years ago I moved to the University of Exeter which again is a slightly odd choice because at the time there was really any dementia research going on there but it seemed like there was real opportunity to set up a new group and for me to start to lead things and I’ve been really very fortunate to be able to develop a group and Exeter as an environment for dementia research is completely transformed now, so we’ve got people like Clive Ballard as Dean and there are many other senior dementia researchers who’ve come in and now it’s a real melting pot for, for doing great things so it doesn’t really answer your question but…

Piers:  It does, it seems like a bit…

David:  A few loose observations about how I’ve ended up here, a little less corporate than Carol’s highly polished approach [laughing]

Piers:  Well you’ve got a nice corporate plug in for Exeter [laughing]

David:  I was just following my dreams, Carol, rather than ticking the boxes!

Piers:  Thank you David. So a common thread or a theme running through many of the podcasts that I’m sure you’ve listened to over the past year has been the importance of the need to think differently and sort of innovatively about how to collaborate to drive dementia research forward, and from what I’ve read about the DEMON network, this sounds like it fits exactly what you’re doing. So maybe David we could start off by telling us what the DEMON network is?

David:  Well, the ambition for the DEMON network is fairly simple really, it’s to provide a different sort of infrastructure to bring people together all of whom have got some kind of interest in the application of data science and AI to dementia research. So there was already things about the dementias platform UK (DPUK) for data and you know the portal that they provide and it seemed like there were loads of really useful resources, but actually we became increasingly frustrated with the lack of opportunity for people to train, to meet each other, to collaborate, and to just think differently. So going back to your point about innovation, I mean the whole point of the network is to get different creative people together and it doesn’t just involve data scientists and say machine learning scientists, it’s not all about that, it’s about bringing people like that together with say clinicians and members of the public, researchers who know a lot about dementia but perhaps don’t know how to manipulate data in sophisticated ways. So the ambition is to effect a kind of step-change in the way in which we do dementia research – we’ve got more and more data but I think a lot of us don’t really know what to do with it and there are a lot of people out there who know a lot about data but not about dementia, or you’re a clinician and you want to get involved in research, or you’re a member of the public who wants to have their voice heard, so it’s attempting to be that, a melting pot for innovation.

Piers:  That’s very interesting. So how closely does it fit and work with some of those sort of big data infrastructures, I don’t mean big data, but large infrastructures for data that you’ve mentioned, is it, does it sit alongside?

David:  So it’s designed to plug a gap, so Carol is on the steering committee and so is Sarah Bauermeister at Oxford who is one of the senior people at Dementias Platform UK, there is no point at all in replicating what others are doing, we’re very clearly looking to plug what we perceive to be a very important gap and I think it really started with a really early conversation between Carol and I thinking about how we might be able to do something which would really mix things up, do you think that’s fair?

Carol:  Yeah, I think there a few key words that are important here and you’ve mentioned some – so one’s collaborative and I think the other is absolutely interdisciplinary, so you know in particular, maybe in the life sciences, but particularly in dementia there tend to be, not silos, but people work in their own individual area and one of the things that this does is to bring all of the different disciplines together so I think that is key. And another aspect is the innovation, so I don’t think it matters how brilliant you are, you do not know everything, so this is an approach where it brings a lot of those really intellectual brains together and then by working together that’s where you come up with the innovation. I think those things are hugely important for dementia research.
Piers: Yeah, so that’s really interesting and I think mindful of our audience which is largely a sort of mix 50:50 UK-based and international-based early career researchers in dementia and then people sort of more broadly interested, where have you got to and what’s your sort of call to that early career community for getting involved?

David:  I mean, we aim to become the national network and there’s certainly a UK-focus to it, but it is open to everyone and it’s free to join. And we have had interest in events from people from North America and mainland Europe and from further afield, so from that sense its open, even though the focus is on the UK and developing local capacity, in terms of bringing everyone together, even though it’s early days, we’ve already got over 150 members in the network and again, going back to Carols’ point, these are people from all sorts of different disciplines and we’ve had lots of clinicians for example signing up to be part of a clinical advisory group so they are normal member but they are also sitting aside as a resource really that people can call on. So imagine you’re trying to do something clinically relevant but you’ve maybe never met a patient with dementia before in a memory clinic before and you want to know more about that. So we’re developing that kind of infrastructure, similarly we’ve got a patient public involvement group. And as these things evolve I think it will become a lot less about our preconceived ideas about the direction we should be going in and what we think should happen and it should be about, it should evolve and be really directed by the membership.

Carol:  But coming back to your point it also includes from a career stage, everybody from early career researchers to actually very experienced and influential people and that’s also really important because it can help to shape you know, early career researchers, careers actually, they learn ever such a lot but also they bring the innovation into the space as well so I think it’s great…

David:  We’ve been really chuffed by the senior people that have signed up and we have, we have really junior people signing up as well and that’s exactly how we want it, everyone is welcome and that also opens up lots of different opportunity doesn’t it, like if people are interested in mentoring for example we might be able to help line people up, so I think we all know how challenging it is for early career researchers to progress their careers to get the right advice, I think you are very vulnerable to who happens to be your line manager, often the principle investigator on a grant, they are not necessarily the best people to give you careers advice, or if you’re looking to change discipline, I mean how do you do that, maybe you don’t need to talk to, if you’re a computer scientist and you want to work in medicine or medical school maybe you want exposure to different types of people.

Carol:  I do think, talking about interdisciplinary, and people changing careers, and maybe they don’t need to change careers, I think this is the first time I’ve seen physicists and engineers and informaticians and mathematicians all coming together like you said with clinicians, pre-clinical researchers and that I think is really great to see.

Piers:  Can you describe a little bit about sort of one of the events you’ve had already, give our listeners a sense of what happens at them, there was a datathon in Exeter wasn’t there.

David:  Well the very first one was actually, was actually run at the Turing Institute and that was actually before the network had actually become a really concrete idea. We weren’t involved in the organisation of that but they used data, some pilot data from the dementia phenotyping study and people like Simon Lovestone were talking and there was a lot of enthusiasm about, well we’ve got all this data coming and it’s all multimodal data and it was like ‘oh right, how do we, what we going to do with that then’ and people have got different ideas, but most people are not very sure what will actually work so it, we were just mulling that over and that evolved, ok, we secured a little bit of money from the Turing Institute itself to help and then Alzheimer’s Research UK and Carol were very supportive and contributed the vast majority of the funding and then we worked again hand in hand with the dementias Platform UK and Sarah Bauermeister and John Gallacher and we ran the first datathon in Exeter and that, we were asked to organise that at relatively short notice to be honest but we were surprised how well it went, we got really interesting people and the turnout was great, there was a podcast coming from here, you know what I mean [laughing], it was all very…

Piers:  All the best events have a dementia researcher podcast [laughing]

David:  Yeah, yeah, exactly, you’re very prolific!

Carol:  The other thing I really liked about it I must say, because it is a bit of a soap box thing, and it probably isn’t the first example in dementia research but actually it was a really good example of data sharing I think and again from the point of view of you can’t do everything yourself so actually if you are willing to share your data with lots of other researchers and lots of other scientists you get so much more out of it, so I think that aspect was clearly seen.

Piers:  Can I ask about that, so I can see the sharing of, or the creating of networks and connections and I can see the sharing of expertise and ideas but you, so there has been some real sharing of data and what sorts of data are we talking about and what sorts of complexities are there around sort of curating and sharing existent data sets,.

David:  Well, some of that takes us into the Dementias Platform UK realm for sure but I mean there is a huge amount of data out there I mean, one of our…

Carol:  This particular type of data, which I, research-based data and there is a difference isn’t there, research-based data rather than for example electronic medical health records, there are differences

Piers:  So these data were sort of anonymised post-research data as it were…

David:  That’s right, made available through the Dementias Platform UK remote portal, so actually the data sits in Swansea, you never actually download it. So again, there’s the data infrastructure but without the people there…

Piers:  Brains to…

Carol / David:  Yeah, yeah

David:  So it’s like, it seems like those kinds of, that bit of infrastructure is if anything a little bit underused because we haven’t really mobilised ourselves as a group, and you know I said we’ve got 150 or a bit more people already, but I think we need a lot more people than that, you know what I mean.

Piers:  So that’s a 150 people busy touching the network at certain points as it were.

David:  Yeah, so we need, I mean, we’ve been looking into lots of different ways to, to grow that and for it to not just be a London-centric thing, you know, Alzheimer’s Research UK’s network centres are across the whole of the UK aren’t they…

Carol:  They are across the whole of the UK

David:  So one of the key things we’re doing is we’re inviting people from each network centre to act as a kind of lead for data science and AI and of course it is in the context of dementia research, so we want to run events like the datathons but other things as well and as people are signing up they are expressing their interest in different kinds of events and its almost a form market research informing about what we should be focussing our efforts in and applying for more funding to ramp up the scale of what we’re able to do, but already we can tell that certain things you know, like the datathons have been really popular, after Exeter they were run at Swansea and UEA and the DEMON network contributed some of the funding to make those happen, so where it makes sense to collaborate in that kind of way we certainly are, and similarly we would look to do things with the Turing Institute so that’s the national institute for data science and AI. I’ve got a fellowship there and I play a role within the health programme and people like Chris Holmes who works very closely now with ARUK and has now come to regard ARUK as one of the key partners to the health programme with Turing, so I think we’re all pushing in the same direction.

Piers:  A network of networks…

David:  Yeah, exactly, but its all, its across, I mean the more linked up we can be in terms of the different universities, ARUK, the Turing Institute, I think bringing all these things together is really powerful because otherwise we do just do things in silos.

Carol:  And we do things the same way, I think increasing the diversity brings in the innovation as well and you might get a random person or a random group sitting in I don’t know, west coast of America who come to the datathon and look at the data in a completely different way.

Piers:  I do want to get to asking you about Alzheimer’s Research UKs sort of role in the network, but we keep [laughing] but we keep getting into another interesting point, but before we get to that, thinking about exactly that, growing your network and as you said Carol, there’s almost nobody who might not have something to contribute, or who might not increase their own capabilities and capacity by linking into the network, so I’m think of our listeners and people listening to the podcast and people who come to dementia researcher website, would it be reasonable to assume that you know, nearly everybody may have an interest and may have something to contribute to the network?

David:  Absolutely, everyone can play a role in the network, even people who are just, they’re not specialist, they are members of the public, there is a role everyone can play in this.

Piers:  So I think in the podcast, on the website link to the podcast there will be information on how to find out about the DEMON network, and you can join online can’t you.

David:  Absolutely, yes, it is easy and free to join, that’s really important to appreciate, we’re not putting a burden on people to find resource, we’re not asking normal members to fund this…

Piers:  And people can put as much into it as they need or want and have time for

David:  Absolutely

Piers:  So Carol, let’s get on to ARUK…

Carol:  I was just going to ask David one question though, because I’m not sure if we do this but we ought to, do we also advertise at conferences, particularly at international conferences, I don’t know whether we do but we should

David:  Not yet, but we’re getting to the point now where we press released the launch recently, we’re setting up our website for the DEMON website will go live very shortly. You can, they’ll be, there’s online sign up already and we’ll signpost people to that, we’ve now got the twitter account up and running. It’s that combination of, it’s that whole little micro-universe that allows people to access it in different ways and we’ll give people opportunities like if people want to feature themselves on the DEMON network website they can put a little bio and a picture and contact details and things like that, so, again I think we should be, we should be raising the profile of what we’re doing, and national and international conferences are a key opportunity to do that but perhaps not just academic conferences, we need to think about that some more, it could be things like…

Piers:  and not just dementia conferences

David:  That’s right, so there are things in technology conferences, there are all sorts of different things we can think about but again what we need to do is bring key people in who can facilitate that and drive down the cost and make it a bit slicker and grease the wheels really

Piers:  So Carol Alzheimer’s Research UK, what’s the charities role in the network and why does it see it as important?

Carol:  So, we fund it, that’s one aspect, we do fund the network but actually we do provide a national network – we have national network centres all around the UK. We also fund and partner initiatives globally too so essentially that expands our network as well. We, I, we’re interested in it for a number of different reasons. One is, and we’ve talked about this partly already, is to really bring lots of people together, to share data, to bring innovation to the table and have everybody tackle the same problem to come out hopefully with solutions, the other reason we’re interested is part of the DEMON network is around the early detection of diseases and the data that David mentioned from a study called the deep and frequent phenotyping study, so that data was collected from that study, it’s around trying to understand the utility of some digital measures and digital tools for measuring clinical data. Alzheimer’s Research UK are leading an early detection project with a similar but much larger remit to try and really understand if we can develop a digital tool that will detect disease early and I think being part of this network significantly helps that and as we start to obtain data from similar but different cohorts we can utilise the same people and networks to really analyse that data and look at that data.

Piers:  So it fits as kind of a wider…

Carol:  Yeah it all fits in terms of our wider remit.

Piers:  So also really, so segues nicely into something people will be really interested in, getting into a little bit of the detail of what types of data and what types of things are you training machines to look at, where’s the sort of state of the art at the moment

David:  Well, I mean, we’re a little bit hamstrung by data availability but as individual groups or individual researchers, we’re all hoovering up data like there’s no tomorrow, I mean, it can be genetic…

Piers: With good governance I should add!

David:  Oh, of course, but I think we need to be data, we need to think about ways of combing different types of data, I mean, one of our publications recently was relatively simple compared to what could be achieved but we’re combining things like genome-wide data with lifestyle factors to look at gene environment interactions and predict future dementia risk but you know, the dementia outcome in that can be improved by adding in more primary care data or we could improve further by adding in some digital phenotyping data or you know, there’s MRI data, so whether its neuroimaging, I mean it’s just so much data, I think this is one of the biggest challenges that we face is working out what to do with it all and how to combine it. Because there are geneticists doing fantastic work on genetics, but again, how can we do things a little bit differently to combine the different data types and sometimes it relies on an awful lot on clinical judgement to combine variables in sensible ways, it’s not all purely a data-driven exercise, so again, being a bit sensitive to the context and thinking about how things can be combined sensibility is also quite useful.

Piers:  So that sort of environment and picture you paint of so much data and almost too much opportunity, wood for trees type of environment, is the network well placed I would think, stop individual groups having to fight through that jungle on their own without having to worry about those things so maybe the network can become, networks of small groups that are taking chunks of it that are, you don’t have to worry about some other parts of the universe and then slowly bringing things together.

David:  That would be fantastic, if you wanted to use a cohort study or particular type of data and you had no experience of it but you’re in a network where someone’s used that study 10 times before and they’ve published on it and they can tell you all about the problems with it or the challenges and they can really open that up to you and they are generous enough to share code or even variables or maybe you even invite them to be a co-author on a paper, maybe that leads to something else and that leads to pilot data and you go to ARUK or another funder to secure a grant, I mean you can see how things could snowball but it really is, heavily dependent on not starting from scratch, this is just a massive efficiency here

Piers:  Yeah and it is very much on trust, building, trust is built on personal experience with each other and the network is looking to do that. I’m thinking of other fields and I wonder if we’re moving in a direction with data science in dementia which is looking more like the field of physics for example and how researchers work together and understand they need to pool intelligence and their brains, instead of the paradigm we’ve had forever which is very individual researcher and research group based, as you say if people are good enough to share their stuff, rather than understanding they have to, I mean do you think the network will…

David:  If we’re allowed to be controversial for a moment, some people have made their careers out of having privileged access to data and exploiting that and we don’t want to perpetuate that model, we want to open it up, we talk about open data and open science, we want to encourage people to be more collaborative, it’s a pretty simple aim in that sense but of course it is the early career researchers who benefit from that the most those opportunities because they’re the ones that need to show what they can do…

Piers:  And least constrained by previous behaviours.

Carol:  But it’s the slightly odd environment still, I do think we are a little bit behind, so if we come back to physicists and mathematicians or informaticians, I mean they’ve shared data, there are 20 names on papers and they are listed in alphabetical order, they’re just open and the share data and they work on data together so life sciences, it’s not just dementia, I think it’s life sciences, I do just wonder if research is incentivised in the wrong way because you’re almost incentivised not to share data, and lots of people do by the way but not to share data so that you have the key publication, you are the one that is published and maybe once you’ve published everything you want to publish then you might share a little bit of data, so I do think the DEMON network encourages, doesn’t encourage that behaviour and almost

Piers:  Well, David is allowed to be controversial maybe Carol this is putting you on the spot, you may not be wearing your corporate hat but of course let’s just realise here in the UK we’ve had an election recently we have a government with a manifesto pledged to double dementia research funding every year for the next 5 years I think it is, what might we see Carol, some of that funding coming into this type of initiative, more funding from the government to support these new ways of researching

Carol:  I would love to see funding, I mean, coming into, there are lots of areas of dementia research that need funding including the translational medicine space, the target validation, so lots of it but I would like to see encouraging people to come together and utilising information data that exists and trying to move forward dementia research utilising information that is already there, I think, I think that’ great but I could list an additional 20 places where the funding could be used in a very, very good way [laughing].

David:  How rude!

Carol:  No, no! Including this, including this

David:  Dementia research funding, I mean we talk about doubling, but we need to bear in mind the absolute amounts of money available and how it compares to better areas, better funded areas of medicine, so we’re still a poor relation compared to things like cancer research and cardiovascular disease research

Carol:  we are

David: and I think we have a long way to go

Piers:  And we’ll all be agreed, and hopefully people listening will too, the network is in an area which needs to grow and seed new ways of working and if there is new funding opportunities it should be there with all those other areas with its fair share of funding

Carol:  There is more leverage if you do it together as an interdisciplinary

David:  I mean it doesn’t replace another area of dementia research, you still need to generate ideas and come up with the data, it just compliments all of the existing areas of dementia research, it’s not in any way designed to compete with, you know, what the molecular biologists are doing or the…

Piers:  Well you heard it here first, all, anyone listening whatever your field of research there is something for you in the network. I’m aware that we are getting near the end of the time we have today, so Carol David do you have any final points that you’d like to make about the network

Carol:  So first of all, join the DEMON network, also please visit the Alzheimer’s Research UK website you can read lots of about the various different research areas we fund and all of our different grant schemes that we fund,, you can read all about our conference in March, please attend the conference, yeah, come talk to us.

David:  Absolutely, I mean, Alzheimer’s Research UK is a great charity and I feel really privileged to be involved with this and we are genuinely passionate about what we do and this is a free network and I think people should get involved I really do, I think it would be amazing to do things differently and to innovate and to, and as we grow things like the website and so on and have a look at the kind of people who are getting involved, they are impressive people at every level and we really want early career researchers to play a really leading role in this.

Carol:  We really do

Piers:  Thank you both for joining us today, it’s been fascinating, I think it is a really interesting and important network and I’m sure we’re going to hear more about it as it progresses so please do come back and talk to us again, Carol for a second and then David you’ll become a regular.

So if any of our listeners have anything to add on this topic please do post your comments in the forum on the website or drop us a line on twitter using the hashtag ECRDementia.

We have profiles of both today’s panellists on our website and there you’ll also find a transcript of this podcast so do please tell any colleagues who may not be able to listen.

Finally, please remember to subscribe and leave a review of the podcast through the website and you can listen on iTunes, Podbean, Soundcloud and iTunes and please tell your friends and colleagues.

Voiceover: This was a podcast brought to you by Dementia Researcher: everything you need in one place. Register today at dementiaresearcher.nihr.ac.uk.


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