Podcast – WHO Supporting Dementia Research Knowledge Exchange

Voice Over:

Welcome to the Dementia Researcher Podcast, brought to you by University College London and the NIHR, in Association with Alzheimer’s Research UK, Alzheimer’s Society, Race Against Dementia and the Alzheimer’s Association, supporting early career dementia researchers across the world.

Dr Anna Volkmer:

Hi everybody. I’m Dr Anna Volkmer and I am delighted to be back in the hot seat to host this week’s Dementia Researcher Podcast. Now, in 2017, the Global Action Plan on the Public Health Response to Dementia, 2017 to 2025, was unanimously adopted by the World Health Organization member states.

The Global Action Plan provides a set of actions to realize the vision of a world in which dementia is prevented, and people with dementia, living with dementia and their carers, receive the care and support that they need to deliver life with meaning and dignity.

Today we are going to be discussing the World Health Organization’s Global Observatory Knowledge Exchange platform and the blueprint for dementia research. As both a senior research fellow at UCL and a clinical speech and language therapist specializing in dementia implementation of research into practice is actually what motivated me to do research in the first place. So today, I’m delighted to be joined by Jim Mann, a person living with dementia and a peer reviewer for the World Health Organization’s Global Dementia Observatory Knowledge Exchange platform. Hello, Jim.

Jim Mann:

Hello.

Dr Anna Volkmer:

And Laura Garcia Diaz, who works for the World Health Organization’s Brain Health Unit. Hi, Laura.

Laura Garcia:

Hey, Anna.

Dr Anna Volkmer:

Now you are both here to talk to us about how the Global Observatory Knowledge Exchange platform aims to support this whole process. Jim and Laura, before we get started, would you like to tell us a little bit about yourselves and the platform to get us going? Perhaps Laura, you could go first.

Laura Garcia:

Sure. Thank you, Anna, and thanks so much for having us today. We’re very excited to talk about a topic that I think the three of us are quite passionate about, which is implementation of research findings. So as you mentioned, I work for the WHO’s Brain Health Unit and I’ve been fortunate enough to facilitate a lot of the processes that go behind the platform. So I’ll talk a little bit more about that through our conversation. And I have worked in knowledge translation related to dementia for about five years now. I started in Canada and in this new role, I’ve been working with Jim in different parts of the world and we are united again here today. So it’s always delightful to be with him in these spaces and I look forward to the conversation.

Dr Anna Volkmer:

Brilliant. Thank you so much, Laura. Jim, would you like to introduce yourself?

Jim Mann:

Sure. My name is Jim Mann and I live on the West Coast of Canada and I have Alzheimer’s and had the diagnosis since February, 2007. And following that, I’ve been very active on various boards and various research projects here and in other countries and otherwise keep busy. Some of it being writing, but always using the experience of myself with dementia, but also of my following along my mother’s journey with dementia.

Dr Anna Volkmer:

Well, thank you so much for being here today. It’s such a privilege to have you here, Jim and Laura. I’m going to get straight into the questions. I wonder this platform, can you tell us a bit more about this platform, Laura, and what the benefits are of submitting a resource for consideration for inclusion in the platform?

Laura Garcia:

Sure. So the platform was launched in 2021, so it’s been a few years since the platform became live. And it’s meant to provide a space for researchers, policy makers, really anyone working in the dementia field that has developed any source of resource related to dementia, to share those resources globally, to support one another, to really attain the goals or the targets that are outlined in the global action plan for the public health response to dementia.

We know that one of the biggest challenges for a lot of researchers is translating the research into practice. So we get into research because we want to impact and make changes and then the research it’s done. And typically what happens, is we have a peer review article, it gets published and we kind of go to the next project. And there’s not always that opportunity to think about how can we actually translate what we have into either a practical tool or influence policy so that we can see actual changes taking place in our day-to-day lives.

And one way of addressing that is really by having a dissemination plan from the beginning and then thinking about tools that we can create to translate those findings. And the platform provides an avenue for researchers to then disseminate that work more globally. So I always envision people coming together, exchanging resources and hopefully eliminating duplication of efforts. We know that a lot of time, resources, energy goes into developing these resources. So ideally, this would be a place where we can share some of that to lower that duplication of efforts and really work together to improve the lives of people living with dementia globally.

When a resource gets submitted to the platform, it goes through a peer review process. So that’s another avenue of disseminating that work because we have peer reviewers from all over the world that then have their eyes on these resources. And oftentimes, they will email me and say, “I’m so glad I found this resource and now I’m going to be sharing it with my colleagues.” So that’s another avenue. And similarly, we have a focus group of people living with dementia, which Jim will be able to talk to more about it. And they also have shared with me, “I’m so glad we found this resource now, I can share with other colleagues of mine or people living with dementia that I know.” So that’s just another way that we’re supporting that dissemination of resources and findings.

Dr Anna Volkmer:

Brilliant. And actually doing this podcast is part of that dissemination, I hope. As soon as I heard about the podcast and was offered the opportunity to host it, I was excited about this platform. Influencing policy is the dream. We want to influence policy to enhance practice to make people’s life better. So this just sounds like the ideal international platform supported by the World Health Organization. It’s just very exciting. So thank you for sharing this with us. But I’m really fascinated actually because you were talking about the involvement of people living with dementia, the engagement of people living with dementia in the review of these resources. And I know Jim, this is really what you’re part of. How does that work? Can you tell us a bit more about that?

Jim Mann:

The process is, I think has been a learning experience for everybody. And overall, it’s been a very positive experience, I think for everybody. There has been the recognition around the stigma of dementia and the misunderstanding of dementia within the broader community, if you will, as well as the research community. So the World Health Organization intentionally created the focus groups to provide the feedback on the submissions. And I think it’s important that the people with dementia will often provide a whole different perspective to research or a project or whatever than other researchers. And certainly, I remember on a project talking amongst the three of us with dementia, and the researchers in the background a couple of times, one I’d hear whisper, “I’d not thought of that in that way, that’s a different perspective.” I give credit to the World Health Organization to understanding that and creating that and supporting the group.

And they support the group by making sure the information is sent out about a week before so that we do have the opportunity to not just read it, but to understand the context and make notes to ourselves. And they keep that communication going. It’s not just let’s have the one meeting and see you some other time. It is ongoing. And it is, I don’t know what the right word is, but it is sincere. It’s not just, “We need to do it, so we better just do it.” We do engage with World Health Organization and certainly the facilitator that we have in our group, and they have a relationship with us. And I think it has proved to be very, I dare say, successful because there have been some resources that we have not necessarily approved because the wording is wrong, because their approach has been wrong. They haven’t, in fact, included people with dementia. So I think that that perspective is such an important part of the review process.

Dr Anna Volkmer:

Can I ask you a follow up question? As a speech and language therapist, I guess, obviously very interesting in communication. And I was just pondering, is there anything that the organization does to support communication difficulties? You said that you get information sent out in advance and you have focus group kind of discussions. Is there anything else that happens to support communication?

Jim Mann:

Well, a readiness to assist when and if necessary. If there’s a challenge with one program, we’ll connect via another one. And if we start the meeting and one of our members is not there and suggested that they would be there, then they take a moment to send a quick text or email and inquire and are they coming or is everything okay or whatever. And I think that that’s all very positive and it’s not just, we’re a group of people that are taken for granted. We’re not in any way.

Dr Anna Volkmer:

And it’s very practical, isn’t it? That’s the real life, making sure that people are telephoning them, prompting them, reminding them. That makes so much sense to me. I can imagine though that some of the vocabulary can be quite challenging if you’ve got a language difficulty. But we can come to that in a minute because I’ve got some more questions. I guess essentially, the biggest question our listeners might be thinking about is how can researchers join the platforms, or not only submit their own research but perhaps become peer reviewers themselves? Laura, can they do that?

Laura Garcia:

Yes. Thanks for asking that. We’re always encouraging people to join our peer review network, especially if you speak another language. We’re looking for people with different expertise because we get resources submitted from all over the world, and I try to match them as closely as I can to someone that has that background. So if you go on the platform, at the very bottom of every webpage, you’ll see kind of a little box that says Join the Peer Review Network. And when you click on that, you’ll just have to fill out a survey just for basic information for me to gauge what your background is, making sure you’re meeting certain criteria that we need. And we do ask for your CV just to double check your background. And once we review all of that, and if it looks like you’ll be suitable to join the peer review network, we just send out some forms that would have to be completed to join that network.

And I do want to add that we have caregivers that have joined the network. It doesn’t have to be a researcher. Anyone with lived experience can join. We have some people living with dementia that actually have chosen to join a more traditional way of reviewing resources through the peer review network instead of the focus group. So what I do when a person living with dementia is interested in supporting our work, I always have a one-on-one meeting with them, try to gauge what’s the best way that they’d be able to provide that type of feedback. And then based on that, either the focus group, the peer review network, or we can just find other ways, again, going back to communication to support their feedback to make sure that their reviews are included in the review process.

Dr Anna Volkmer:

Lovely. So it’s very person-centered, which we like to hear because of course, everybody has different communication needs and difficulties. So that’s fantastic. And I’m sure really reassuring for any of our listeners who might be living with dementia. You never know, there might be some people out there who are interested in joining. So it sounds like Laura, you’ve got a really bespoke process where you speak to people individually to plan how they can contribute. That’s absolutely fantastic. And to follow up on that, besides resources, is there anything else a stakeholder could submit for inclusion on the platform?

Laura Garcia:

Yes, of course. The resources are the main thing that we host, but we also have a space for something that we call success stories. So this can be anything that to really broadcast good news stories of what’s happening globally. So this can be an initiative that you’re starting and you want to just show, this is what we’re doing, this is what we’re seeing so far. Workshops, awareness campaigns, anything that’s not necessarily a resource itself, but it’s an initiative that’s happening worldwide that you want to broadcast. We also take those in and I typically work with anyone that wants to submit that. We draft something quite short and simple and then we can link that to other sites where the person can find more information about that. So if anyone is interested in just broadcasting some of their work, initiatives, good news stories, we always like to hear good news of what’s happening worldwide, then they can definitely connect with me and then we can create a success story so everyone else can also learn from your work.

Dr Anna Volkmer:

So it’s not just for very, I know we’ve been talking about translational research. It could be if somebody is doing something much more, they could still think about uploading it to the platform using. Is that fair?

Laura Garcia:

Yeah.

Dr Anna Volkmer:

The good news stories. Have you got any examples?

Laura Garcia:

[inaudible 00:16:56].

Dr Anna Volkmer:

Yeah. Do you have examples of that to share with our listeners? I imagine that would be really useful.

Laura Garcia:

Yeah. Things that I can think of right now have a lot to do with dementia friendly initiatives. So let’s say creating a group in a cafe of people that have come together. So those are a lot of the ones that we have gotten so far. A few things came out to support people living in a crisis, the Ukraine crisis, as an example, like some work that has been done to ensure people living with dementia are still supported during times of a crisis. So we have that up right now and some workshops that we have kind of been involved in worldwide to just showcase that people are coming together to talk about how we can best support not only people living with dementia, but also the research community as a whole.

Jim Mann:

I was just going to say, Anna, that I look at the success stories as a continuation of that whole knowledge exchange process because we can all learn from success and we can all learn from how success was achieved. And so I view even the success stories as a whole part of that knowledge exchange.

Dr Anna Volkmer:

That makes sense. And actually, I often struggle to convey some of my research in more traditional forms because what I do is often about personal stories, rather than about say numbers, which is often there’s a perception that research is about something numerical. But actually, personal stories, people’s lives, that’s often the biggest success. I think that example from the Ukraine that really brings alive what you’re describing. How do you measure that in numbers? That’s a real life success story. It’s so moving.

Jim, the global status report on the public health response to dementia shows that despite some encouraging efforts, most countries are far from reaching the adopted targets of this global action plan. Jim, I’d love to hear it. In your words, can you share with us how the blueprint for dementia research can help meet those targets? What would be your opinion?

Jim Mann:

I think that it will provide insight for some that they haven’t had or don’t have access to necessarily, an understanding of the global issue is that can be a part of their local numbers. And in a lot of cases, and I would suggest that it increases the awareness of the global issue, the global concerns, the global points of, what’s the word… Well, it’ll also point to areas of potential generation of new data that, oh, we could go to this area or this group of people or whatever. And really, at the end of the day, it also I think suggests the credibility of talking to and dealing with people with dementia directly.

Dr Anna Volkmer:

Laura, did you want to add anything?

Laura Garcia:

Yeah, just add a little bit of a background for what the blueprint for dementia research is, because some of the listeners may not have heard about this. So this is a product that was launched by the WHO in the fall of last year. And the aim of this blueprint is to support the global prioritization of dementia research. And it provides a coordinated mechanism to facilitate timely and high quality evidence generation, fast track innovation, foster effective research and implementation, and really guide resource mobilization. So we know that research should be an integral part to our response to dementia. So all the global targets that are outlined in the global action plan would benefit from the fruits of research. And this blueprint provides, as the name suggests, a blueprint for how we can really move research forward and prioritize it so that it’s becomes that central piece to our response to dementia.

And it summarizes the current state of dementia research. Across the six research themes that have been identified, we highlight some gaps that are currently existing, outline some strategic goals, and we also provide some tools on how to address those research gaps. And I do want to just highlight that to make sure research is addressed properly, we need to have an enabling research environment and that can be achieved through what we call drivers of dementia research. So in the blueprint, we have eight drivers of dementia research. Two of them are things that we’re talking about today, which is knowledge translation and the engagement of people living with dementia throughout the research process. So it’s a blueprint that we really encourage researchers to read, to be familiar with and to see how they can support addressing some of the gaps outlined in there and look at their own environment and what are some of the things that perhaps are missing to ensure that they have an enabling environment for their own research.

Dr Anna Volkmer:

So what are the six main areas you mentioned at the beginning that the action plan focuses on?

Laura Garcia:

So for the blueprint, we have dementia, epidemiology and economics, dementia disease mechanisms and models, dementia diagnosis, drug development and clinical trials, dementia care and support, and then dementia risk reduction. So all the areas that will help us address dementia globally.

Dr Anna Volkmer:

Brilliant. It’s funny, since we planned this podcast, I have since read a couple of things and the dementia care and support domain has been on a couple of documents I’ve read. And it’s funny how that, it’s kind of bit serendipitous in relation to communication supports. I’m making an assumption, but I guess that’s where that fits in, this idea of supporting people and their family members in terms of living well. And I assume that’s where my research would fit.

As you’re speaking about this, I’m thinking about my research and I’m doing a study at the minute. And we are trying to involve people from across all the major World Health Organization regions of the world. And it’s really challenging actually to engage people across every single region. But we found it so valuable when we have been able to, and so important. In fact, I’ve almost realized the act of approaching people in these different areas is a driver. It’s enabling. I’ve been able to just approach people who I know through my networks and then it’s enabled them to contribute to what they perceive to be a wider, more important study. So they have given me really positive feedback on that. And there’s only one region I haven’t managed to get any kind of collaborator in. But I shall look at the blueprint and use that to fuel my thinking about whether there’s anything there.

Laura Garcia:

Even in what you just shared, you’ve already mentioned a few things that are mentioned in the blueprint. Equity and inclusion of course, is very big. We need to make sure people are included that are typically not. And that means reaching out to people from low and middle income countries that either haven’t had the opportunity or because of stigma, really it’s very difficult for them to even feel empowered or safe to participate in things. Sometimes it is really about safety. So I like how you mentioned that some people have come back to you and said, “Now I feel more inclined to participate in other things,” because that shows empowerment. That shows that you provided an avenue for them to feel like, “I can do this, I can still contribute,” and we are acknowledging that they have such valuable input to provide.

Dr Anna Volkmer:

And it’s quite fascinating because the people I work with, the clinical researchers, so speech and language researchers who I really respect and I’ve been in meetings with, and then they’ve said, “I don’t feel confident to do research because the research field is so dominated by English speaking people,” for example. But now you’re an English speaking person helping me. I’m saying, “I didn’t even, of course, that makes so much sense.” I’m bilingual. I would struggle to convey my research in my other language. I can see that issue. And actually, it’s actually very pleasing for everybody involved. It’s actually, I found it to create an ongoing environment of collaboration. So it’s not just about the project you’re doing, it’s then the kind of future potential is great as well.

Laura Garcia:

Yeah. Jim and I actually had a conversation last week and it’s all about collaboration, like how do we foster collaboration so we can work together, because we need one another to be able to make big changes and big impact at the global local level. Any level we need collaborations.

Dr Anna Volkmer:

Absolutely. But that’s hard. Easier said than done [inaudible 00:27:24].

Jim Mann:

It’s also recognizing that what happens in your part of the world may not in fact be the way it’s done in another part of the world. That’s where I became very aware of the difference, even between urban and rural. Just for a contract I had where the chair was in a rural part of my province and I was urban, and he would often reinforce to me, so it’s firmly ensconced in my brain that what happens in the metropolitan area doesn’t always translate well. And so I think that that extends to what you were talking about for your own research. I think in a lot of cases, people in other parts of the world will even be surprised that you’re approaching them, just simply because they have not been approached before. And so your recognition of their potential contribution and your potential contribution to them is really well received, I suspect.

Dr Anna Volkmer:

As you say, their contributions are so valuable to me. I find it’s really illuminating. Different people’s priorities are illuminating. I don’t always assume. I think with my clinical hat on, I’ve learned never to assume. But you have these ideas that everyone has the same or similar priorities for various reasons. But of course, for cultural, for economic reasons, for lots of reasons, our values, our beliefs, there may be huge differences, and we can learn from those differences and similarities. So yeah, I can only advocate for collaboration. It’s always been illuminating for me, and I have that luxury. I feel like it’s a great privilege to keep learning from people. So this is me sharing my, I’m pretty good at talking, unfortunately though as a speech and language therapist. I’ve gone and shared my own experience, my own example. But I wondered if we could talk about a concrete example of what the research community can do to make dementia research more efficient, equitable, and impactful. Laura or Jim, who would like to take this one?

Laura Garcia:

Sounds good. So when thinking about the blueprint, I think there’s different levels of people that can support the implementation of the blueprint. Thinking more national and international research and agencies and funding bodies that can use the research to really prioritize their funding streams. So look at the current gaps and how can we have funding streams that really address those gaps. As a civil society and advocates, so people living with dementia, clinicians, researchers, we can use the blueprint to advocate for research that aligns with that, but also for enabling environments. How can we work together to really create that environment that is enabling of research?

And also as researchers, look at the blueprint and look at the gaps and how can your work help support bridging those gaps. From an equity lens, making sure we are forming those partnerships with low and middle income countries is really important. And just within our own research, making sure there’s that diversity included in there. Again, easier said than done. I know sometimes there’s processes that make it difficult to just know where to look for those individuals or how to engage them, but we really need to start prioritizing that to just improve all diversity and inclusion.

For data sharing. I think data sharing is an interesting one because through the COVID-19 pandemic, we’ve seen how when people come together and we share data, what can happen? So even looking at current laws and regulations to make sure we can exchange data. And within our own research, is there a way that we can share data with others that they might be able to use within their own projects. So those are just some strategies and thoughts that I have on how we can make more concrete actions to enable research.

Dr Anna Volkmer:

And that’s becoming easier and easier, isn’t it, data sharing with kind of tech and making sure we can keep things confidential? I’m part of a project where we are collaborating on some video data, which we are sharing across a number of European countries, looking at conversation strategies. But then big data spreadsheets, that’s sometimes a bit more… It strikes me as a bit more feasible to share that data somehow.

Laura Garcia:

Yes. Yeah, definitely.

Dr Anna Volkmer:

My last question actually, and I think this going to be a longer answer, a bit of a conversation really, is about how we can give researchers or how you would like to give researchers advice. So if researchers are considering how to engage people living with dementia in their work, what would you say to them? What advice would you give them, Jim?

Jim Mann:

I would, number one, encourage them. Just bottom line. Just, “Yes you can.” But it starts from listening, it starts from learning. But I would suggest that the way to start would be to check your assumptions at the door because each person living with dementia is like anyone else, whether they’re employed in a company or whatever. We all have different skills, we all have different talents that we bring to anything we do. And I always remember hearing a presentation from a researcher talking about their process of 10 cups of tea. And it was their suggestion of before fully engaging, sit down and have a conversation with the people with dementia. Have a get to know them and get to know that… Let them get to know you as well and what you’re looking for, what they’re looking for.

And so I had written down that Dr. Deb O’Connor and I co-wrote a chapter in a text, Everyday Citizenship and People with Dementia, in which is written and I quote, “All collaborators have to feel safe and that they have something important to offer. And establishing this foundation takes time.” So it’s recognizing that you as a researcher can do so much. But like I said near the beginning of this podcast, that a person actually living with dementia brings different perspectives on some things that will work, some things that won’t work. And I think to be open to that will only enhance the research and make the outcomes more applicable and hopefully more useful around the world.

Dr Anna Volkmer:

I develop a lot of interventions and I have a vivid memory of someone saying to me, “Anna, if you just put a margin on all the handouts, it would look so much more attractive and people would feel more valued.” And it was somebody who came from a media background. And I said, “Really?” And the entire group said, “Yes, that’s a genius idea.” And it was so simple, so valuable, such a small component that I could easily change and the impact was great. And it was from someone who knew what they were talking about. They knew about layout. And so that comment about people having so many different skills that they can bring to your work. I don’t know about media and graphics, I’ve got no skills in that field. But that’s actually quite handy to have some people with these different creative skills as well as life experience.

Jim Mann:

And that, you extend to people with dementia in research that is in that particular area. But we know that that society generally, including researchers, can often assume a lack of capacity for people with dementia, the automatic assumption of incapability. And it’s too easy to fall into that trap. I talk about unconscious bias in that way, in that that stereotype that is firmly placed in the back of people’s minds that you’re not even aware necessarily of that, but it kicks in. And so it’s just, in some ways, it’s be open to possibilities. And you may be really, really surprised.

Dr Anna Volkmer:

This is such a key component. You’d have a cup of tea with your colleague over a meeting, wouldn’t you? So why wouldn’t you have a cup of tea with a person living with dementia? It’s the same kind of familiarity, the same sense of collaboration and collegialness that you’re trying to foster. So I have to say refreshments, cake, tea, I can see why they’re essential.

Jim Mann:

But I think that so many people will be thinking of the scholastic aspect of research, the, “Oh, I’m not a scholar, I’m not a researcher.” So they will be or could be intimidated to sit in a restaurant and have your cup of tea and cake sort of normalizes the situation and removes that, “Oh my God, I couldn’t do that.” And makes it more of a peer-to-peer type of conversation potentially.

Dr Anna Volkmer:

Yeah. So setting makes a really big difference. I’m glad you’re flagging that. The thing is academic science needs to be described in a way that it makes sense to everybody because otherwise, it’s potentially, maybe I’m a bit biased, it’s potentially not very useful if people can’t understand it. That’s my feeling. Maybe that’s my clinical hat. But Laura, did you want to add anything to what we’ve been saying?

Laura Garcia:

I think what Jim just mentioned, it really goes down to listening, stepping back and listening to people. I was reflecting on even my own journey when I was doing my master’s degree and it was a quantitative work, all numbers. But I still wanted that personal experience with people living with dementia. So I just volunteered the whole time I was doing my degree just to get a better understanding of why am I even doing this research? So that goes back to individuals that are doing just basic science, which is so important, but oftentimes, you’re not as connected to the person living with dementia. But finding opportunities, finding ways to still have their voice present in all the work that we do, because at the end of the day, we’re doing it for a reason and connecting with people, living with dementia.

With technology nowadays, you can watch videos, read books. There’s many ways that we can listen and get informed, and again, be open to possibilities and just acknowledge that we’re not the experts in everything. We have an expertise in something, but that doesn’t make us the experts in dementia necessarily. At the end of the day, I don’t live with the condition and all I can do is just learn from those that do and then do better.

Dr Anna Volkmer:

I’m guessing that sometimes people, well, I believe that sometimes people with dementia and their family members can probably help basic scientists join the dots from their work to the real life translational work and actually enhance their research in many ways.

We’re probably drawing to the end of our conversation. We’ve been chatting for nearly an hour, probably wraps it up for today. So thank you to both of our guests, Jim and Laura. It’s been such an interesting discussion and I’m really excited about this new platform. I’m going to immediately go and look it up and see what I can do, see if I can upload some of my things on there.

Now we have profiles on all of today’s panelists on the website, including details of their Twitter accounts and the platform itself. So please do take a look. And finally, please remember to subscribe in whichever app you’re listening in. And remember to visit the Dementia Researcher website where we publish new content every day, from careers and science blogs, job listings, funding calls and events, and so much more, and perhaps, some of my own blogs too. Anyway, have a great day and goodbye everybody. Bye.

Jim Mann:

Bye-bye.

Laura Garcia:

Bye.

Voice Over:

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