Podcast – What’s new in Alzheimer’s Society fellowships

Voice Over:

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

Megan O’Hare:

Hello and welcome to another edition of the dementia researcher podcast, Alzheimer’s Society have recently made some changes to their funding programmes to ensure the four I’s:

implementation, impact, inclusion, and involvement are considered in every application. So today we will be discussing why they have made these changes and the experience of applying to the scheme, so I’d like to welcome the panel today, Katherine Gray, a research grants manager, at Alzheimer’s Society, Faye Boswell, a research grants officer at Alzheimer’s Society and Antoinette O’Connor, a clinical research fellow at the dementia research Centre here at UCL. Welcome to all – shall we start with a quick round table from the Alzheimer’s Society gang – Faye?

Faye Boswell:

I help to run our research funding rounds and I help to support researchers who apply through our process, our funding process and once they funded we then help to support them and I also help our engagement team to include people affected by dementia in all of our research funding processes as well.

Megan O’Hare:

Ok, Katherine?

Katherine Gray:

Yep so I work with Faye in the grants team at the Alzheimer’s Society, I’ve worked at the society for just over six years, which seems like ages and my job is to sort of oversee our research funding programme so working with Faye to support applicants through the process through our review processes and then to sort of work with our funded researchers to support them to sort of maximise impact their research to make sure that they’ve got everything they need from the society to deliver their projects.

Megan O’Hare:

Ok and Antoinette you did a podcast with us recently talking about your research that maybe you could give everyone a little intro.

Antoinette O’Connor:

So I’m a clinical fellow working at the dementia research centre under the supervision of Nick Fox and my work focuses on familial Alzheimer’s disease and trying to develop accessible biomarkers of presymptomatic disease.

Megan O’Hare:

And I interviewed you for that and it was really interesting so if you haven’t heard that one listen to that one too. Okay, so maybe we can start with you guys talking a bit about Alzheimer’s Society research what you fund – not what you don’t fund, let’s not do negatives – just what you fund and a bit of an intro into that

Katherine Gray:

Yep, okay, shall I start, I’ll give a bit of an overview so we have been funding research right from the beginning of the sort of society setting up – it’s actually our 40th birthday this year –

Megan O’Hare:

Happy Birthday!

Katherine Gray:

Thank you very much and in that time we’ve invested over £70 million into research and that’s because we really believe that research will transform the lives of people affected by dementia and it’s always been a sort of core mission of the Alzheimer’s Society as well as supporting with sort of services and information and support people affected by dementia…

Megan O’Hare:

Can I just quickly interject – from the 70 million is there a 50-50 split with social care/biomed, is it very much social care?

Katherine Gray:

So we’ve always funded both biomedical and care research, typically I think, well, historically I think the balance has been more on the biomedical side because we receive more biomedical applications and biomedical research tends to be a bit more expensive, but we have over in the last five years or so been trying to sort redress that balance and look at sort of more of an equal split, but I think it’s still more, we’re about two thirds biomedical one third care on spend, but we don’t have like an allocated budget for care or biomedical it’s, we’re led by the quality and the number of applications that we get in.

Megan O’Hare:

That is interesting, carry on

Katherine Gray:

So that leads me nicely in my next bit about what we fund, so we, the programme is really broad, we’ve got a really open remit so we look at improving care for people with dementia who have dementia and are living with it today and looking at finding cures and treatments for the future. So if it’s about dementia, then it’s probably going be within our remit in some guise or another, whether that’s the care side of the programme or the biomedical side of the programme. That’s the kind of overview of…

Faye Boswell:

So we have our biomedical stream and our implementation, care and public health stream as well and we have separate boards for these and we offer grants that kind of go through a researchers career from undergraduate to a project grant for independent researchers, so we offer PhD studentships; clinical, junior, and senior fellowships and we recently merged our implementation and care boards together to try and make researchers think about implementation at all stages of their research.

Megan O’Hare:

I was just about to ask, is that requisite for the social care funding that there is a section on implementation in it now.

Faye Boswell:

Yeah

Katherine Gray:

Yep there is now so we, as Faye said, we have had a separate stream in the past so about three years ago we set up their specific implementation funding stream for care research, that ran alongside our care funding programme. But what we’ve done over the last sort of six months is bring those programmes together because we think implementation needs to be considered all the way across, you know, whatever your stage of research you need to be thinking about that end goal and those end-users and making sure that you’ve engaged with those people right at the beginning

Megan O’Hare:

And is it, because we get asked this a lot in various places I’ve been to – is there a sort of budget within the grant to implement, do you see what I mean, so it’s not just you know, thinking about how you might implement it at the end, is there a set budget so you could go out and try and implement it?

Katherine Gray:

So you’d be able to, we don’t have a sort of specific allocated budget within our grants for implementation, but it needs to be integrated into that, their whole project basically and that can be costed for within the projects.

Megan O’Hare:

Okay, and obviously that’s social care not really biomedical because you’re not implementing anything in biomedical, but I wonder, is there anything along those lines within biomedical way you could do more patient involvement even at any biomedical stage, you know, a basic bench scientist might never come in contact with patients and this is probably where you come in Antoinette but you know that, maybe, is there any like part of the grant process:  would you also be looking at biomedical applications in that way?

Faye Boswell:

Yes, so we want going forward, we want biomedical applicants to consider how their research is going to down the line impact people affected by dementia and we want to fund more biomedical research. Well I think we already do get a lot of applications like this, but where even the most basic projects they’re thinking about; its not just going be a paper that kind of sits somewhere, its going eventually move on to the next project, and then the next project after that and turn into something that could that could help people.

Megan O’Hare:

And maybe Antoinette you can jump in and talk a bit about your experience with the Alzheimer’s funding programme?

Antoinette O’Connor:

So yes, I was, I was fortunate enough to be going through this process last year and was just preparing for my interview now actually this time last year so it rings a lot of bells, but I actually really enjoyed the focus of Alzheimer’s Society research and their really strong track record supporting high quality research. In fact, my supervisor, Nick Fox was when he was in my position he was funded by an Alzheimer’s Society clinical Fellowship and seeing how the Alzheimer’s Society supports a quality research and continues to support researchers throughout their career was one reasons I really wanted to apply for this scheme. Also that focus of being on real-world utility is something I’m really passionate about and understanding how my research can be used in practice is something that I think is really valuable and that focus on patient involvement that the Alzheimer Society promotes and facilitates is really great. When I was going through making my application, I was fortunate enough to be working in the Familial Alzheimer’s disease study at UCL and I got to have some patient involvement with my application, I got patients to read my application and actually that was really great because it ensured that I had that you know, that real-world utility that it was appropriate questions that would have utility and that’s why I kind of focussed on accessible biomarkers as a cornerstone of my grant and what is good with the Alzheimer’s Society now is that through the involvement of research network volunteers I get to have ongoing involvement of patients and carers shaping my, not only my research questions, but also trying to understand the results and getting the important messages out there.

Megan O’Hare:

When you said about having the patient involvement during your application process where you could actually talk to them, was that something you set up or was that through the Alzheimer’s Society?

Antoinette O’Connor:

The way the application is structured it encourages you to focus on patient and public involvement, so it encourages you from the get go to think about making sure your research is clinically facing and useful.

Megan O’Hare:

So obviously you encourage that, do you have practical ways to help with that?

Faye Boswell:

So when they submit an application we send all the applications to peer-review and we send it to lay review to our research network and we send it to the whole network and then we combine their scores equally to determine which ones get through shortlisting and then as well as our two board meetings, we have two research network panels which feed up into these board meetings and two representatives from the research network from the panel will go and attend the board meetings as well so that they are involved every part of the process and we give applicants all of the lay comments as well as all of the peer review and board comments so yeah.

Antoinette O’Connor:

So this time last year I had just finished doing my rebuttal and the first section was the scientific comments but there were also lay comments which were quite good at drilling down on particularly on that implementation and what was the utility of my project and actually, as well as that preparing for my interview, because I knew they’d be a member of the research network. I practiced not only with scientific colleagues, but also my housemates because it actually getting a broader focus and kind of not getting to drilled down in the nitty-gritty is actually really important and can highlight things that you wouldn’t have noticed and is definitely I think improved, improved my overall project and I’m really grateful for it.

Faye Boswell:

And they don’t hold back either with their comments [laughing]

Katherine Gray:

No, they really don’t in the written comments or the interviews, they can be quite direct with their questions. Sometimes they ask the most obvious questions in such a simple way that it can, it can catch people out I think sometimes if they haven’t, you know, prepared to talk in a sort more accessible and more lay way about their work and their research.

Megan O’Hare:

Well I guess you want to ensure that it is, because with biomedical you can be a bit hand wavy when you’re like ‘oh yes this is about dementia, it’s about Alzheimer’s’, but it’s sort of your basic biology project really and you’re like ‘yeah I’ll just throw some medical terms in there and you know I’ll get funded. But if you’re not really committed to it then they’ll pull you out on that.

Katherine Gray:

Yeah they’ll sniff that right out [laughing]

Megan O’Hare:

Yeah [laughing]

Antoinette O’Connor:

And when you’re writing the grant, you do your scientific summary and your lay summary, and actually having o do the lay summary and strip away that jargon can also really, expose your project in a way and get you to see where the weaknesses are and your actual understanding of it, because if you can’t translate it down then there is a problem. So that is really really useful exercise for me.

Katherine Gray:

Yeah, I think, I agree, I think it demonstrates a quality in an applicant if they’re able to successfully communicate the projects at a really sort of lay level and a really sort of accessible way. Just to go back a step we do also have a proposal development offer with our research network volunteers so applicants can apply to work with our research network volunteers at their early proposal development stage so…

Megan O’Hare:

So that’s anyone, social care, biomed?

Katherine Gray:

Yep. And so they can apply to work with our volunteers. I think it’s something like six weeks ahead of our deadlines and it doesn’t necessarily have to be for that specific deadline, they can approach us any time.

Antoinette O’Connor:

I did that and that was helpful. I got some feedback because, yeah, and then I refined my lay proposal after that.

Katherine Gray:

It is not a requirement by any means and we can’t offer it to everybody because, you know…

Megan O’Hare:

Time

Antoinette O’Connor:

And that earlier deadline is actually quite helpful for making you, you know

Katherine Gray:

Yeah, it focuses the mind [laughing] but that is an option that is available if people don’t have access to patient groups themselves

Megan O’Hare:

Yeah, ok, so maybe we can come back to, we’re sort of talking about the changes of the focus of your funding programmes and the four I’s. Could maybe on the four I’s?

Katherine Gray:

Yeah so I think we ‘ve touched on a few of them already actually and I think, I think in some ways it shows that this isn’t, these aren’t big changes to our programmes, they’re actually quite integrated in a way we’ve always wanted to fund research, and the way, the work that we have supported I think has often demonstrated these four I’s, but I think we wanted to be a bit more clear about what we were sort of expecting from researchers who apply to us and I think that because we have got such an open remit I think we wanted to be a bit more clear about if you apply to the Alzheimer’s Society these are the things that are really important to us. So just to like touch on them, so we’ve got Impact, Implementation , oh it’s a test of my memory, Include and Involve [laughing]. So I don’t know whether we want to go through them quickly like top line?

Megan O’Hare:

Yes yes, go for it, please do because if it is going to help people when they’re applying to know what you’re thinking then, yeah

Katherine Gray:

Yeah, so, I mean it sounds quite obvious when you sort of talk about them and, you know, they do seem, like quite obvious statements, but so for thinking about Impact: when for, particularly with biomedical projects where as we’ve already said, like the impact can be quite removed, if you’re doing sort of quite basic biomedical science we’re, we’ve made some changes in the application form to sort of ask questions about, the human relevance of that work and even if it is basic biomedical science you still need to be able to put it in that context, that human context and the sort of, demonstrate the sort of relevance of the models that you’re using to the human condition. So and again I think we’ve always funded those sorts of projects in the past but I think it’s just being a bit more clear with applicants that that is what we are expecting them to, and just asking them to just spell that out more clearly in their application forms.

Megan O’Hare:

Because I guess you want, you don’t want to deter people from applying –

Katherine Gray:

Absolutely not

Megan O’Hare:

But you want to make sure that the applications you are getting are of a good quality because you want the researchers to benefit and succeed and

Katherine Gray:

Absolutely, and we don’t want to just fund science for the sake of science we’re really interested in improving lives and to do that we want people who are also thinking in that way even if it is really sort of basic science. So,

Faye Boswell:

We talked a bit about implementation, so , wanting the applicant to include their implementation plan earlier on in their research application, like their project development, so we’ve combined the boards and we’ve changed our application forms as well to kind of ask applicants how they are going to do this.

Katherine Gray:

So I think on the care side it’s, you know we’ve asked some really specific questions about what implementation means and what those plans are and how they’re going to engage with you know end users or knowledge users. But I think even with biomedical research we still want to know what they next steps are for that project even if it, again, if it is basic biomedical science like what is the next, where does this fit in the pipeline like how does, how does this fit into the wider context of work and how is it going to move things forward, so we’re still asking about implementation in our biomedical forms as well.

Megan O’Hare:

This is sort of more of a practical question, but, you Faye said that your job is supporting researchers during the process but also after, so I guess implementation tends to happen further along in the journey, so do you check back in with people, do you encourage people to check back in with you?

Faye Boswell:

So with our funded grantees, they send us a yearly progress report and at the final report stage we ask them how can the Society support you now that your project’s finished and the kind of support we offer, we have our translation team, so we can connect that researcher up with them to talk about how can they take the findings from their project and put that into practice in the real world. We have our communications team, who can help communicate and disseminate the findings from that project and we also have our innovation team who looks at a bit more around the technology side and yeah so there’s like multiple ways that we can offer support for researchers after to help do something with their findings and to get it out there and we also offer dissemination grants so they can apply for further funding and that’s really open as well it’s any activity that they want to do to share their knowledge with wider audiences and people affected by dementia and yeah the relevant people.

Megan O’Hare:

Do you think you might apply to that one Antoinette? [laughing] just making a note

[laughing]

Antoinette O’Connor:

Yeah

Katherine Gray:

I would say as well that often the results do come at the end and that is where a lot you know, a lot of the work I guess begins in terms of how we might be able to work with researchers and support them but I did get an email today from one of our fellows who isn’t even starting until January and she was, she emailed me today and she said I really want to work with you guys beyond my project and I really want to work with you to maximise the impact of my project can we get that started before I start. So I’ve sent emails round today to various colleagues in different teams to say this is the project that she’s doing I think it offers a lot of value to the Society and our wider work, because you know we do offer, you know we provide information, we offer services, you know there are lots of other ways that we can work together with our funded researchers so.

Megan O’Hare:

In a way, you know, science is catching up maybe with the sort of project management/business world where you would come up with a communication strategy from the beginning, you wouldn’t wait until it was the end, you’d have all these things up and running and constantly be thinking about it so I guess, why not treat research the same if you want it to actually have an impact you need to…

Katherine Gray:

Yeah exactly, and we fund three centres of excellence in care research and we’ve got project teams for each of those within the society from all of our different teams so someone from policy, someone from our training teams, someone from our knowledge team, all working to make sure that we make the most of the results that come out of the research that we fund.

Megan O’Hare:

Ok, where id we get to with the I’s? I think,

Katherine Gray:

Two left [laughing]. So the other one is Include, so this one is looking about, looking at inclusion and sort of the diversity of participants, but also I guess just who’s being considered in, in research design and who is being included. So we’re asking all researchers about who they are including, we’re looking closely at inclusion and exclusion criteria to to really encourage people to think about the populations that they’re looking at and how representative they are. And again, just to make sure that the, the research funding is as relevant to as many people as possible.

Megan O’Hare:

Coming back to you Antoinette, I’m trying to remember from last time. You obviously have a cohort participants that you…

Antoinette O’Connor:

…see on a regular basis

Megan O’Hare:

Yeah, and how have you gone about getting them in your life? [laughing]

Antoinette O’Connor:

So I’m really fortunate that there’s been a long-running study of Familial Alzheimer’s Disease at UCL since the first gene was discovered back in 1991. And actually, that gene discovery was triggered following a note in the Alzheimer Society Journal and then one lady wrote in talking about her family tree and how this wasn’t normal, gathered up all her family and all the blood samples and from that there was discovery of the ATP gene and the amyloid hypothesis was essentially born, but since that time, there’s been families with this autosomal dominant family history. So one person each generation, pass, having the disease with reasonably consistent ages of onset, so that story has been going since, since that time, and so I inherited (pardon the pun [laughing]) really, a really well phenotype cohort so I was very fortunate there. And I guess, it is a unique opportunity to study presymptomatic disease, which is really more and more important, as we’ve seen with the recent trial failures, so

Megan O’Hare:

So is that ongoing like you will accept new families?

Antoinette O’Connor:

Yep, so it is ongoing recruitment so new families, and we recruit, often you’ll, somebody will come in and say ‘oh actually my brother is interested’ and so any time new research participants we often get new family members, but then new, new families are also recruited so we get neurologists from around the country sending people, also our familial Alzheimer’s Disease support group is a great avenue for people finding out about the research and becoming involved. So they’re two of the major additional pathways

Megan O’Hare:

So for your inclusion, you just don’t exclude anyone, in a way [laughing] you’re just open doors

Antoinette O’Connor:

Yeah, we include all family members and what is a big thing that’s important with this study is if you are a member of the family you don’t need to know your genetic status if you are at risk, and by that I mean if your parents had Familial Alzheimer’s Disease and you have a 50-50 risk of inheriting the gene, you don’t need to find out your mutation status to part of the study you, most in fact, 90% of the study are at risk family members who don’t know their status.

Megan O’Hare:

I remember that from last time, yep. [laughing] Okay anything more on Include, shall we

move on to Involve.

Faye Boswell:

So the society, we’ve pioneered the involvement of people affected by dementia in research with our research network and it’s their 20 year anniversary, birthday and, yeah, I think are applications, updated applications form kind of puts more opportunities for the applicants to describe their approach to this and something I’m seeing a lot more in applications now is people including people affected by dementia or our research network volunteers as co-applicants on, on a project, which I think is really fantastic and I know that my not be an option for all applicants, but I think we are starting to see researchers think more about this and when we are kind of giving advice to researchers on different ways that they can include people affected by dementia like we have a great engagement team within the research directorate at the society and we offer advice to researchers. And yeah, so I think, I feel like we’re already doing this and I think researchers are starting to think about this more widely.

Megan O’Hare:

Okay, so maybe we can wrap up as we coming to the end now about what are your top tips for applicants.

Faye Boswell:

So yeah a big part of my job is kind of supporting applicants before they apply to make it the best application that they can, and I would say my top tips are make sure you’re building the right team and this applies to all the different types of grants we offer, but in particular the PhD studentships and the fellowship where the funding board they need to be convinced that the applicants are going to be well supported throughout their project and we need to, we need to be reassured that there’s going to be relevant dementia research expertise so no matter what your project is, I think making sure that you have that knowledge and experience on your team is really important. Secondly, having strong engagement and dissemination plans which we kind of touched on a little bit. This is commonly overlooked by applicants, and especially in biomedical applications as well, so having strong engagement dissemination plans, it will ensure that you’ve got a well-designed study that’s going reach the relevant target audiences and make sure your project has as much impact as possible so weaker applications they don’t usually know who their target audience is, and there are, they are unclear of what they want to achieve and they focus only on the activity and that the changes or the impact that will come from the project and finally and probably most importantly, why is your project relevant to people affected by dementia, so underestimating the lay summary section can really set your application back as we’ve mentioned their heavily involved in the review process and so yeah I think that one of the most important things to consider when you’re applying.

Katherine Gray:

My sort of top tip would be to take advantage of us and the grants team [laughing] at the Alzheimer’s Society, we, we are constantly manning emails, we’re on the phone. We offer webinars to applicants, you know, we sometimes spend a lot of time with applicants helping them figure out how to pitch an application or how to apply, yeah, so you know if you’re got any questions you don’t understand any of the guidance you know, just, you know, we’re human beings and we’re very happy to chat to you, so please do just get in touch in and talk it through, rather than applying for something that you’re not quite sure about or…

Megan O’Hare:

This has been really interesting. I am a biomedical scientist and have friends who biomedical scientists and we are definitely, sometimes take a step back and we like just ‘we’ll just do this tiny experiment, and it’s so great everyone will love it but then we haven’t thought any of the impact or anything.

Katherine Gray:

Yeah, we don’t want to put people off, you know, we don’t want to you know make life more difficult, we just want to help you position your application as best as possible.

Megan O’Hare:

And Antoinette, as someone who has actually successfully applied for an Alzheimer’s Society grant, do you have any top tips for applicants?

Antoinette O’Connor:

I think giving yourself enough time is really important and making sure that not only do you give yourself time but that you also give your supervisors and co-applicants enough time to read it and give feedback, because that’s really important and definitely helped a lot with with my grant and then looking at the Alzheimer’s Society funding programme looking at the four Is, making sure that your application meets the funding aims of that of the society is really very important. The other thing that I found helpful was getting actually friends who aren’t medical or scientific to read my lay summary because they quickly pointed out the rather out large chunks of jargon and problems and I think that’s really helpful and if you do go on from the application to having an interview actually being interviewed by lay people as well can sometimes prepare you for the research network volunteer questions so I think that is quite important and when you’re going through the rebuttal process I think that’s really important time to think about your project critically and how to improve it, and when you’re doing your presentation for the interview to try and deal with the rebuttal almost in the presentation so that you can say you’ve taken feedback on board and how you’ve improved things was something I thought was quite important for the interview and then I guess the final thing is to that focus on patient and public involvement because I think that’s beneficial for application and also your research so

Megan O’Hare:

Actually something you said there about giving yourself enough time; you obviously have two, is it? calls a year, you know bid calls and you advertise them beforehand.

Faye Boswell:

For our call grants, we have two deadlines a year and the deadlines, usually in March and September.

Megan O’Hare:

Yeah, so you could be thinking about it however long in

Faye Boswell:

And what some people do is they’ll start an application in one round and then realise they need more time and then wait for the one after that. And then…

Megan O’Hare:

And then at that point actually coming back to your, you know, you’re happy to help with applicants, so you could start could you submit it and get feedback that way. Or would you prefer people not to submit if it’s not fully finished? But actually contact you

Katherine Gray:

Yeah we want to collect you fully formed ideas for the submission because the review process is really long and very involved [laughing] so we prefer people who are really we want your best ideas, but that yeah certainly you can work, you know you can open an application form, have a look at it, you know how those early discussions perhaps engage with us, talk to us about you know the questions or working with our volunteers, or how they might be able to engage with their own sort of end-users and then you as Faye said you could skip around and then apply in future. We try to keep things as consistent from round to round as we can, so that people aren’t too surprised by changes in the sort of form.

Megan O’Hare:

Okay great, thank you. Well it is time to end today’s podcast recording. I’d like to thank panellists:

Katherine, Faye and Antoinette and everyone please ensure you remember the four I’s:

implementation, impact, inclusion and involvement.

You can visit our website to look at the profile of all our panellists. And finally, please remember to subscribe to this podcast through SoundCloud and iTunes and Spotify, thank you!

Voice Over:

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