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Language: EN.
Segment:1 Dementia care research and the UK DRI with Adrian Ivinson.
[MUSIC PLAYING]
Segment:2 Please introduce yourself.
ADRIAN IVINSON: Well, I'm a Scotsman. I was born in Glasgow, but started moving around shortly after that. But I came back to Scotland and did my undergrad and my master's, and then a PhD in Manchester. And that was all genetics. But then, I left the country. I moved to the States. And I've just returned from there after 24 years, so it was quite a big absence. But the reason I returned was absolutely the Dementia Research Institute.
Segment:3 What is the UK Dementia Research Institute (UK DRI)?.
ADRIAN IVINSON: The UK DRI is really, I think, a unique opportunity. And I think it's unique because it's got these three components to it that you rarely-- probably once in a lifetime that you get this opportunity. So a significant amount of funding, a focus on an important need-- dementia-- and then this idea that you could build it from scratch.
ADRIAN IVINSON: Almost always what happens when we get significant new funds or resources is you're building on top of a very well established structure. And it's very difficult to change structures under those circumstances. But in this case, you've got a blank sheet. So when I heard about that, I contacted them. And I said, I want to be part of this. I think this has an opportunity to do something truly almost unique when it comes to dementia research.
Segment:4 What is the ethos of the UK DRI?.
ADRIAN IVINSON: The Dementia Research Institute-- the director is Professor Bart De Strooper. And he said something-- this is why he was selected to be the director, because he said something both simple, and a bit specific, and quite visionary. And that is, we need to step back. We need to understand the absolute fundamentals of how these diseases are coming about.
ADRIAN IVINSON: At the molecular, and cellular, and the systems level, what is it that's going wrong? And when does that start? Let's understand that-- those fundamental characteristics-- well before symptoms. And using that knowledge, let's see if we can start thinking about, and building, and translating for new treatments, and almost certainly for prevention. I think prevention is the way that, as a global community of researchers, we'll go with it.
ADRIAN IVINSON: So that was the point of the DRI. It was to establish that group of researchers across the UK that would take up that challenge. Step back, sort out the basic biology. And then, on that foundation, move forward.
Segment:5 How was the structure of the UK DRI established?.
ADRIAN IVINSON: So the structure came about through a series of open competitions across the UK. And essentially, there were three parts to that competition. One was identify this visionary leader. And we have Bart, who is one of the world's most recognized dementia researchers. So we're very fortunate to have attracted him from Belgium. The second one was to invite universities around the UK to express an interest in becoming the hub, or the headquarters, for it. And UCL won that competition. And then the third part of the competition, if you will, was to invite other universities to propose how they could be a formal part of the DRI, if you like-- the spokes.
ADRIAN IVINSON: We refer to those as the five centers. So starting from the north, we have Edinburgh, and then we have Cardiff. We have Cambridge. We have Imperial, and we have King's joining UCL. So six fantastic universities. And in each of those universities, what then happened was there was an opportunity to look across those universities and identify some established excellent researchers who had something to bring to this question of the basic biology of dementia.
ADRIAN IVINSON: And we have that in place, now. So we have the six universities, and we have 13 group leaders distributed across those six universities. Having established the structure for the DRI, what we then need to do is not only knit those groups together and make them work as a single group, but we need to make sure that we've got hard and fast and robust and productive collaborations with other dementia researchers in the UK and, of course, globally.
Segment:6 What is the Care Research agenda?.
ADRIAN IVINSON: Yeah, the Care Research agenda is a really interesting one. So I mentioned that a lot of what goes on in the DRI will be basic biology and basic neurobiology. The Care Research agenda is a little different. So I think what the UK does very well is it has long established and effective ways of working directly with patients and caregivers in the community, really providing them the sort of support that they need. Of course, there's a lot of research around that.
ADRIAN IVINSON: How can we do an even better job with that? And so we're not looking to-- what would I say?-- interfere with that. I think that's very well established. I think it works well. I think there are funds and processes and structures in place to make sure that continues. It's critical. But what we thought we could do, being a more basic biology group, is we could look at that interface with Care and think, what if we could come up with some new measures of patients that were very much Care relevant, but also relevant to the more basic biology we're doing?
ADRIAN IVINSON: So one of the challenges in dementia is, how can I track, for example, the progression of the disease? These typically are slow, progressing disorders. And it's difficult to get a handle on that one month to the next, or one year to the next. So over the years, you'll see a decline in the cognitive abilities of a patient. But actually, it's slow and it's sort of noisy data. So we thought, maybe we could come up with some new technology that would enable us, for example, to measure that much more accurately and to quantify some of those changes.
ADRIAN IVINSON: That, of course, would be very relevant to care if we could predict which patients were going to-- how their disease was going to develop and how rapidly the decline would be. That would be relevant. But it also would be relevant to the basic biologists who would then look for correlates and say, if this part of the dementia patient population is seeing their disease progressing this way, what are the biological correlates of that? And what does that tell us about the underlying disease?
Segment:7 What are the challenges and opportunities in care research?.
ADRIAN IVINSON: I think one of the big challenges is to make sure that the Care Research & Technology program does not sit independent and separate from the rest of the DRI. We wanted it to be very much part of the other parts of the DRI. And by and large, those communities-- the more basic neurobiology side, and the more patient-focused care research side-- they don't tend to talk much.
ADRIAN IVINSON: They tend to read different journals. They tend to go to different conferences and meetings, and sort of move in different circles. So that's one of the big challenges-- make sure that we actually bring them together. So when we've identified the new associate director of the Care Research and Technology Program and the host institution-- that could be anywhere in the UK. When we've identified that, we will make sure that that new associate director becomes part of the broader UK DRI associate director's leadership group.
ADRIAN IVINSON: I think the other thing that will be challenging is-- you take risks with research all the time. So we're asking people to be very innovative and to take a risk. And we need to manage expectations because, when you take a risk, when it works out, everyone thinks you're a genius and congratulates you. And when you take a risk and it doesn't work out, it can be perceived as a failure.
ADRIAN IVINSON: I don't think that's right. I don't think they are failures. I think you learn from failed experiments and hypotheses that don't work out. So we have to make sure we get that right, that we give the new associate director and the team that she or he will lead-- we need to make sure that they understand that we support a bold, risky idea.
Segment:8 What are the next steps and future outlook?.
ADRIAN IVINSON: The end point, ideally, is that we can prevent dementia. And secondarily, for those who already have it, we can mitigate it, slow the progression. So what you do is you identify the sorts of things that you need to have in place to achieve that. And as long as you keep taking one step at a time, then that's justifiable and that's reasonable. Whether that takes 5 years, or 10 years, or 20 years or longer, I don't know.
ADRIAN IVINSON: And I've stopped being quoted on the 10 years. But somewhere along the line what we have to do there is we have to make sure that we are genuinely improving our understanding of the basic biology, and we are genuinely improving our understanding of patient experience and what is changing in those patients. The way that you can assess whether you are making robust and valuable discoveries is you look at who pays attention to your discoveries.
ADRIAN IVINSON: So none of us are interested in conducting experiments, getting good results, writing them up, and having it sit in a journal gathering dust. What we do want is for people to read the output-- that product of research-- and to think, we could use that. We could use that to develop a new drug, or a new device, or a new approach. And that means industry almost always-- whether it's startup companies, or biotech companies, or well-established pharma-- when they pay attention to your research, it's a reasonable guess that you're doing something right, because they can see their way to actually applying it to patients.
ADRIAN IVINSON: So we'll pay a lot of attention to that. Of course, we will make sure that we're publishing good research and disseminating and sharing it with the world. But when a completely objective third party votes with their own resources to pick up your research and develop it, then I think that's an important step. So we'll pay particular attention to that. [MUSIC PLAYING]
Segment:1 Dementia care research and the UK DRI with Adrian Ivinson.
[MUSIC PLAYING]
Segment:2 Please introduce yourself.
ADRIAN IVINSON: Well, I'm a Scotsman. I was born in Glasgow, but started moving around shortly after that. But I came back to Scotland and did my undergrad and my master's, and then a PhD in Manchester. And that was all genetics. But then, I left the country. I moved to the States. And I've just returned from there after 24 years, so it was quite a big absence. But the reason I returned was absolutely the Dementia Research Institute.
Segment:3 What is the UK Dementia Research Institute (UK DRI)?.
ADRIAN IVINSON: The UK DRI is really, I think, a unique opportunity. And I think it's unique because it's got these three components to it that you rarely-- probably once in a lifetime that you get this opportunity. So a significant amount of funding, a focus on an important need-- dementia-- and then this idea that you could build it from scratch.
ADRIAN IVINSON: Almost always what happens when we get significant new funds or resources is you're building on top of a very well established structure. And it's very difficult to change structures under those circumstances. But in this case, you've got a blank sheet. So when I heard about that, I contacted them. And I said, I want to be part of this. I think this has an opportunity to do something truly almost unique when it comes to dementia research.
Segment:4 What is the ethos of the UK DRI?.
ADRIAN IVINSON: The Dementia Research Institute-- the director is Professor Bart De Strooper. And he said something-- this is why he was selected to be the director, because he said something both simple, and a bit specific, and quite visionary. And that is, we need to step back. We need to understand the absolute fundamentals of how these diseases are coming about.
ADRIAN IVINSON: At the molecular, and cellular, and the systems level, what is it that's going wrong? And when does that start? Let's understand that-- those fundamental characteristics-- well before symptoms. And using that knowledge, let's see if we can start thinking about, and building, and translating for new treatments, and almost certainly for prevention. I think prevention is the way that, as a global community of researchers, we'll go with it.
ADRIAN IVINSON: So that was the point of the DRI. It was to establish that group of researchers across the UK that would take up that challenge. Step back, sort out the basic biology. And then, on that foundation, move forward.
Segment:5 How was the structure of the UK DRI established?.
ADRIAN IVINSON: So the structure came about through a series of open competitions across the UK. And essentially, there were three parts to that competition. One was identify this visionary leader. And we have Bart, who is one of the world's most recognized dementia researchers. So we're very fortunate to have attracted him from Belgium. The second one was to invite universities around the UK to express an interest in becoming the hub, or the headquarters, for it. And UCL won that competition. And then the third part of the competition, if you will, was to invite other universities to propose how they could be a formal part of the DRI, if you like-- the spokes.
ADRIAN IVINSON: We refer to those as the five centers. So starting from the north, we have Edinburgh, and then we have Cardiff. We have Cambridge. We have Imperial, and we have King's joining UCL. So six fantastic universities. And in each of those universities, what then happened was there was an opportunity to look across those universities and identify some established excellent researchers who had something to bring to this question of the basic biology of dementia.
ADRIAN IVINSON: And we have that in place, now. So we have the six universities, and we have 13 group leaders distributed across those six universities. Having established the structure for the DRI, what we then need to do is not only knit those groups together and make them work as a single group, but we need to make sure that we've got hard and fast and robust and productive collaborations with other dementia researchers in the UK and, of course, globally.
Segment:6 What is the Care Research agenda?.
ADRIAN IVINSON: Yeah, the Care Research agenda is a really interesting one. So I mentioned that a lot of what goes on in the DRI will be basic biology and basic neurobiology. The Care Research agenda is a little different. So I think what the UK does very well is it has long established and effective ways of working directly with patients and caregivers in the community, really providing them the sort of support that they need. Of course, there's a lot of research around that.
ADRIAN IVINSON: How can we do an even better job with that? And so we're not looking to-- what would I say?-- interfere with that. I think that's very well established. I think it works well. I think there are funds and processes and structures in place to make sure that continues. It's critical. But what we thought we could do, being a more basic biology group, is we could look at that interface with Care and think, what if we could come up with some new measures of patients that were very much Care relevant, but also relevant to the more basic biology we're doing?
ADRIAN IVINSON: So one of the challenges in dementia is, how can I track, for example, the progression of the disease? These typically are slow, progressing disorders. And it's difficult to get a handle on that one month to the next, or one year to the next. So over the years, you'll see a decline in the cognitive abilities of a patient. But actually, it's slow and it's sort of noisy data. So we thought, maybe we could come up with some new technology that would enable us, for example, to measure that much more accurately and to quantify some of those changes.
ADRIAN IVINSON: That, of course, would be very relevant to care if we could predict which patients were going to-- how their disease was going to develop and how rapidly the decline would be. That would be relevant. But it also would be relevant to the basic biologists who would then look for correlates and say, if this part of the dementia patient population is seeing their disease progressing this way, what are the biological correlates of that? And what does that tell us about the underlying disease?
Segment:7 What are the challenges and opportunities in care research?.
ADRIAN IVINSON: I think one of the big challenges is to make sure that the Care Research & Technology program does not sit independent and separate from the rest of the DRI. We wanted it to be very much part of the other parts of the DRI. And by and large, those communities-- the more basic neurobiology side, and the more patient-focused care research side-- they don't tend to talk much.
ADRIAN IVINSON: They tend to read different journals. They tend to go to different conferences and meetings, and sort of move in different circles. So that's one of the big challenges-- make sure that we actually bring them together. So when we've identified the new associate director of the Care Research and Technology Program and the host institution-- that could be anywhere in the UK. When we've identified that, we will make sure that that new associate director becomes part of the broader UK DRI associate director's leadership group.
ADRIAN IVINSON: I think the other thing that will be challenging is-- you take risks with research all the time. So we're asking people to be very innovative and to take a risk. And we need to manage expectations because, when you take a risk, when it works out, everyone thinks you're a genius and congratulates you. And when you take a risk and it doesn't work out, it can be perceived as a failure.
ADRIAN IVINSON: I don't think that's right. I don't think they are failures. I think you learn from failed experiments and hypotheses that don't work out. So we have to make sure we get that right, that we give the new associate director and the team that she or he will lead-- we need to make sure that they understand that we support a bold, risky idea.
Segment:8 What are the next steps and future outlook?.
ADRIAN IVINSON: The end point, ideally, is that we can prevent dementia. And secondarily, for those who already have it, we can mitigate it, slow the progression. So what you do is you identify the sorts of things that you need to have in place to achieve that. And as long as you keep taking one step at a time, then that's justifiable and that's reasonable. Whether that takes 5 years, or 10 years, or 20 years or longer, I don't know.
ADRIAN IVINSON: And I've stopped being quoted on the 10 years. But somewhere along the line what we have to do there is we have to make sure that we are genuinely improving our understanding of the basic biology, and we are genuinely improving our understanding of patient experience and what is changing in those patients. The way that you can assess whether you are making robust and valuable discoveries is you look at who pays attention to your discoveries.
ADRIAN IVINSON: So none of us are interested in conducting experiments, getting good results, writing them up, and having it sit in a journal gathering dust. What we do want is for people to read the output-- that product of research-- and to think, we could use that. We could use that to develop a new drug, or a new device, or a new approach. And that means industry almost always-- whether it's startup companies, or biotech companies, or well-established pharma-- when they pay attention to your research, it's a reasonable guess that you're doing something right, because they can see their way to actually applying it to patients.
ADRIAN IVINSON: So we'll pay a lot of attention to that. Of course, we will make sure that we're publishing good research and disseminating and sharing it with the world. But when a completely objective third party votes with their own resources to pick up your research and develop it, then I think that's an important step. So we'll pay particular attention to that. [MUSIC PLAYING]
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