Podcasts

Podcast – Using ‘Join Dementia Research’

Hosted by Adam Smith

Reading Time: 32 minutes

In this podcast we discuss ‘Join Dementia Research’ the free to use, NIHR service run in the UK which supports Early Career Researchers to find participants both with and without #dementia for theirs studies. Talking about how is helps researchers, and the practicalities of using it.

Adam Smith is joined by Clare Shaw, Research Delivery Manager for Join Dementia Research, and two researchers who have used the service. Victoria Shepherd a Research Associate from Cardiff University and Anne-Marie Greenaway, also a research associate from the University of Reading.

A study published in the BMJ last year, showed that 44% of RCTs failed to meet their final volunteer recruitment targets, and at the same time the public is frustrated at not knowing how to get involved in studies. This is where Join Dementia Research helps.

To find out more about the service and how you can use Join Dementia Research visit:

https://www.joindementiaresearch.nihr.ac.uk/content/researchers

To find out how you could play a part in promoting the service, and helping more people to become involved visit:

https://learn.joindementiaresearch.nihr.ac.uk


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.

Adam Smith:

Hello, my name is Adam Smith. I work for the NIHR at University College London, and I’m pleased today to be hosting this week’s podcast recording for the NIHR Dementia Researcher website.

Adam Smith:

Today we’re going to be talking about Join Dementia Research. This is a topic I’ve been really looking forward to talking to for ages, because I have played my kind of small role in bringing this about. So it’s something I’m really pleased, and I think is well overdue us having a conversation about.

Adam Smith:

So just to give some context for what Join Dementia Research is. A study published in the BMJ last year showed that 44% of RCTs fail to meet their final volunteer recruitment targets, and it’s only a few years ago that charities were sharing frustrations from their supporters that they didn’t know how to get involved in research studies. They’d see this exciting news about research studies that were in the headlines, and then they’d have no way to find out about them or get in touch about them.

Adam Smith:

And at the same time, of course, we’ve got these stats on the number of studies that were failing to recruit on time to target. And that kind of counts, particularly, I think, for Early Career Researchers, particularly those that are working in academia and in universities, as opposed to in the NHS, where you can have the best research question in the world, but if you have no way of reaching out and finding people to become involved, it becomes tricky.

Adam Smith:

So we’ve got people on both sides. We have these people with dementia, and their carers and family members, who have no practical way of exercising their enthusiasm for studies. And at the same time we have frustrated researchers.

Adam Smith:

And so what we’re going to talk about today is Join Dementia Research, which solves all those problems, doesn’t it?

Adam Smith:

So, today, I’m joined by Clare Shaw, who’s a Research Delivery Manager for Join Dementia Research, and two researchers who’ve actually made use of it. We’ve got Victoria Shepherd from Cardiff University, and Anne-Marie Greenaway, who’s a Research Associate from the University of Reading.

Adam Smith:

Hello, everybody.

Anne- Marie Greenaway:

Hello. [crosstalk 00:02:13]

Adam Smith:

Maybe we can start by just doing a little round table, so we can get to know a little bit more about everybody. So if I can start with Clare, maybe.

Dr Clare Shaw:

Yep, so I’m Clare Shaw, I’m the Join Dementia Research, affectionately known as JDR, so I will call it JDR a lot throughout this podcast, Research Delivery Manager, based at the NIHR Clinical Research Network Coordinating Centre in Leeds. I’ve worked at the NIHR Clinical Research Network for nearly nine years. Most of them, well, the last six years have been in the Cancer Research Network, and I started working on Join Dementia Research nearly three years ago when Adam’s team passed it over for it to be run within the Clinical Research Network.

Adam Smith:

Very effectively, as well, can I say?

Dr Clare Shaw:

Yes. Yes. We’ll come on to that.

Adam Smith:

Anne-Marie.

Anne- Marie Greenaway:

My name’s Anne-Marie Greenaway, and I am an Early Career Researcher at the University of Reading, and I’m currently recruiting participants via JDR.

Adam Smith:

So are you doing your PhD right now, or are you post-

Anne- Marie Greenaway:

Yes.

Adam Smith:

How far in are you?

Anne- Marie Greenaway:

Coming into my final year.

Adam Smith:

Final year. Is that three or five?

Anne- Marie Greenaway:

Three.

Adam Smith:

Three years. Okay. So that’s an exciting-

Anne- Marie Greenaway:

Tense.

Adam Smith:

So you’ve remained quite focused as well then, to not deviate.

Anne- Marie Greenaway:

Yes.

Adam Smith:

So what’s your area of research?

Anne- Marie Greenaway:

So it’s actually a PhD in biomedical engineering, but it’s to do with dementia, music, and depression.

Adam Smith:

Fantastic. And if I can come finally to you, Victoria.

Dr Victoria Shepherd:

Yeah. So I’m Vicky Shepherd. I’m from Cardiff University. I’m a researcher there. I’m involved in research in lots of different areas including care home research, but I also hold an NIHR Fellowship, in which I’m exploring the sort of ethical, legal and practical issues around involving people who lack capacity to consent in research. So, of course, this may include some people with dementia at times, as well as lots of other conditions that may involve cognitive impairment.

Adam Smith:

And you’ve finished your PhD, right?

Dr Victoria Shepherd:

So I’m coming to the end of it. [crosstalk 00:04:24] It’s a doctoral fellowship.

Adam Smith:

Okay. And I did actually see if anybody’s looking, I think fellowships have just opened for the NIHR as well. They’re taking applications right now for the first part of this year. So just plug in for the NIHR there.

Adam Smith:

So, thank you very much. It’s nice to meet everybody. I should say that we’ve all, apart from Anne-Marie, I think, we’ve worked together for quite a while, haven’t we, Victoria? Or Vicky?

Dr Victoria Shepherd:

Yeah, we have, through care homes, and those kind of things.

Adam Smith:

And Clare and I work together pretty routinely, because, as much as I don’t … Involved in the day to day running of Join Dementia Research, I do still play a role in my work in the office of the National Director for Dementia Research, and trying to make sure this is part of the care pathway and that patients become involved.

Adam Smith:

So, actually, that’s a good place to start. Clare, could we maybe come to you first, and could you tell us a little bit more practically about … So what is JDR? How does it work?

Dr Clare Shaw:

So JDR is a registry for people who want to get involved in dementia research. So that can be people with dementia, their carers, healthy volunteers. Anyone who’s basically interested in doing dementia research signs up on to Join Dementia Research. And they can do that in three different ways. They can do it online, so they can go on to Google JDR, and find it, and sign up online. Or they can do it with our three charity partners, with Alzheimer’s Research UK, Alzheimer’s Society, and Alzheimer’s Scotland. And you can phone them and they can do the registration over the phone. And we still have the good old fashioned paper-based applications, and we use them in, say, for example, in promotional materials in GP surgeries, or for an event, et cetera. So people can sign up in those three different ways.

Dr Clare Shaw:

So to date, we’ve got nearly 40,000 people signed up onto JDR. So, as I say, they’re people that are signed up, ready, waiting to take part in research.

Dr Clare Shaw:

And then the main part of my job is to work with researchers, like Vicky and with Anne-Marie, to get their studies onto JDR. So that means that we work with the researchers to put the main criteria of their study on to Join Dementia Research.

Dr Clare Shaw:

So, for example, if you’re looking for people with Alzheimer’s disease aged between 70 and 80, and they live in a certain area, we will work with you to set your study up.

Dr Clare Shaw:

And I say to people, it’s a bit like match.com. Maybe the viewers here are too young to know what match.com is.

Adam Smith:

It’s not like Tinder, no?

Dr Clare Shaw:

No, there’s no swiping.

Dr Clare Shaw:

So we match them together. So the people that want to take part in research, in a certain criteria, then match to the study. And then the researchers get a ready-made list of volunteers that could potentially may be eligible to take part in their study.

Dr Clare Shaw:

And we say it’s a bit of a “starter for 10” you know? They’re given a list of volunteers that could potentially be eligible to take part in their study, but they have to screen the volunteers first.

Adam Smith:

And then follow up.

Dr Clare Shaw:

Yeah.

Adam Smith:

So what kind of people are registered then? I mean, it’s not only people with dementia, is it?

Dr Clare Shaw:

No. So, as I say, out of the nearly 40,000 people we’ve got registered, roughly about 20% of those have got a diagnosis of dementia. And then we have a cohort, as well, of people that we call “the worried well”, the, “I’m not aware of a specific diagnosis.” So those could be the people that may be going through their dementia journey. They might think that there’s something wrong with their memory, but they don’t have a formal diagnosis, or they might have gone to see their GP, and they’re starting their journey and they’re maybe not at the memory clinic. Or we have a lot of carers that sign up onto …

Adam Smith:

Carers, as well. That’s good, because I know there’s a lot of Early Career Researchers and they’re looking at family carers and the roles they play.

Dr Clare Shaw:

We have a lot of studies on Join Dementia Research in the carer area, as well. So it’s not just studies for people with dementia. We have a lot of studies for carers. And also, as I say, we’ve got a lot of healthy, what we call “healthy controls.” You know, people without dementia.

Adam Smith:

People without dementia.

Dr Clare Shaw:

Yeah.

Adam Smith:

Yeah. And they’re all ages. So they’re from 18 right up to 60 … So right up to older, yeah.

Dr Clare Shaw:

No, the oldest person in JDR is 102.

Adam Smith:

Fantastic. So pretty much there, you would like to think that there’s something for … I don’t think there’s any demographic of people that dementia researchers will be looking for that isn’t covered under that group. And so what can we match on? What do you actually ask these people [crosstalk 00:08:51]?

Dr Clare Shaw:

Yeah, so when people sign up onto JDR, as I say, on the three different ways that you can, they’re asked 14 mandatory questions when they sign up, and they are age, name, postcode, if they’ve got a diagnosis of dementia, what type of dementia? So there’s 14 mandatory questions to start with. And then, depending on how you answer the mandatory questions, it could lead into over a hundred questions being asked.

Dr Clare Shaw:

And then vice versa, when we’re matching the studies with the researchers, it’s the same questions that we kind of use to match. So are you looking for males, females? The age range. And also we can go into more depth. It really depends on the study, and depends on the number of volunteers that you’re looking for. I say to people, “JDR is more of an art rather than a science.” So it’s very important, we find, when we’re working with the researchers that you have that conversation with the researchers to make sure what they get out of JDR is exactly what they want.

Dr Clare Shaw:

Because you have to remember, when people sign up onto JDR, they’re self-reporting. So they’re saying what they think their diseases is, and so someone might say, “I’ve got mild Alzheimer’s disease,” but might actually be moderate.

Dr Clare Shaw:

And the other thing that we have to take into consideration is JDR is three and a half years old, nearly four. People signed up onto JDR may be a while ago, and they haven’t updated their record.

Adam Smith:

[inaudible 00:10:17] records. Right.

Dr Clare Shaw:

So, it’s a huge push for us within the NIHR Coordinating Centre to get volunteers and researchers, if they notice there’s something not right, you know, something’s changed on a volunteer’s record, to update that record with the volunteer’s consent.

Adam Smith:

So most of the core information there should be good enough to match to most studies by the sounds of it. So whether you’ve got, you know, age, diagnosis, health conditions, disabilities, more about their domestic circumstances, as well, and whether they have a carer, some of it’s used for contacting, but fundamentally the onus is on the researcher then to look for the people and get in touch.

Dr Clare Shaw:

Yeah. And what we do say is, when volunteers sign up on to Join Dementia Research, when volunteers sign up, they can either get an email alert if they’ve signed up with an email account, or what we’re saying to researchers is, “These volunteers have signed up onto JDR and they’re waiting to be contacted.” All researchers that use Join Dementia Research have to go undergo some training.

Adam Smith:

Well, we’ve got Anne-Marie and Vicky here who’ve used it. So let’s come back to the detail, and can I maybe just come to you first, Vicky? So you’ve made use of it. What was the study you were recruiting to?

Dr Victoria Shepherd:

So the study I used JDR for was part of my fellowship project. And this is a particular study called the “DECISION study”, which is an interview study exploring family members’ experiences of making decisions about research on behalf of someone who lacked capacity. So, in this case, a carer of the person living with dementia. And the aim of the study is eventually to develop a decision support tool to help family members who are approached to act as a consultee or a legal representative on behalf of a person they care for.

Adam Smith:

So were you specifically, did you go, because you can see how you might go about that two ways. Did you match to people with dementia and then ask if they had a carer, or did you match to carers?

Dr Victoria Shepherd:

So I matched to carers, and that in part was because I was looking for carers of people with probably more advanced dementia, and I wasn’t certain that JDR would necessarily have captured that, knowing that it’s a relatively new program. So people might have signed up at perhaps an earlier stage of dementia. So I searched initially through carers, and because I wanted carers who had decided that the person should take part in research, as well as the person shouldn’t take part in research, and I thought that was the best way of capturing that.

Adam Smith:

Because you can see how that’s tricky, isn’t it? If you register to this and say, “I’m a carer”, unless there’s some specific questions then to find out, “Are you currently a carer, or formally a carer? Do you care for somebody with Alzheimer’s? How severe is that person’s progress?” That’s quite a hard group to actually get to, straightforward. So was JDR useful?

Dr Victoria Shepherd:

Very useful. So these were people that I probably wouldn’t have been able to approach in great numbers in any other way. So, for example, out of the participants who took part in my study, about two thirds were recruited through Join Dementia Research. And, as I say, because it’s a relatively rare experience, so not many people who lack capacity take part in research, so trying to identify people that have been involved in a decision on their behalf, was generally quite a sort of small population, if you like. So having something like Join Dementia Research, that has got a large geographical spread, it meant that I could start by identifying eligible participants quite close to home, because I wanted to visit them and do the interview face to face, and then could widen that out as I needed a sort of larger pool of participants.

Adam Smith:

Yeah, to draw upon.

Dr Victoria Shepherd:

Yeah.

Adam Smith:

So geographical location can also be part of the matching?

Dr Victoria Shepherd:

Absolutely. Yeah.

Dr Clare Shaw:

Yeah.

Adam Smith:

So that’s good. If you can also define, “Not only am I looking for these people, but I need them to be in this area.” That’s what you really need, isn’t it? Particularly for a study like yours.

Adam Smith:

But equally then, I guess, does that mean you can put it on and say, “I don’t care where the people come from,” particularly if it’s a survey or something like that that you’re looking to-

Dr Victoria Shepherd:

Yes.

Adam Smith:

As I move instantly across … Actually, before I come away from you Vicky. So what was the process you went through to, you know, how did you find it? How did you come about it? What was the process you went through to get your … ?

Dr Victoria Shepherd:

So I knew about Join Dementia Research partly because of my involvement in care home research, and so I contacted Join Dementia Research, first of all, and as Clare has mentioned, had that conversation to see whether it might be a suitable place to recruit participants. Then, as I’m sure we’ll come on to, then I had to provide information to Join Dementia Research about the study protocol, a copy of my approvals for the study, ethical approvals. And then, once we had decided on the geographical spread, so Join Dementia Research were able to identify what sort of likely numbers of participants if I set the limits at certain …

Adam Smith:

Fantastic.

Dr Victoria Shepherd:

So 30 miles, and those sorts of things.

Adam Smith:

So this was a conversation, it wasn’t just some faceless, you fill in a form and then you get a yes or a no [crosstalk 00:15:15].

Dr Victoria Shepherd:

Not at all.

Adam Smith:

Like your Ethics.

Dr Victoria Shepherd:

Yeah, no.

Adam Smith:

[crosstalk 00:15:18] It’s really not Ethics.

Dr Victoria Shepherd:

Yeah, exactly. So it’s very much, as a researcher, you’re the expert in your sort of study and what sort of population you’re looking for. And then Join Dementia Research are the experts in knowing how Join Dementia Research might be able to match to that study.

Adam Smith:

So that personal service. Well done, Clare. Virtual thumbs up. You can’t see this.

Adam Smith:

Anne-Marie, you’ve also used JDR, of course. So what kind of people were you looking for?

Anne- Marie Greenaway:

So I was looking for people, still am-

Adam Smith:

Still.

Dr Clare Shaw:

It’s open.

Anne- Marie Greenaway:

… 65 years and above, with and without a diagnosis of cognitive impairment. And it’s an online survey, and it’s across the UK.

Adam Smith:

So in that instance, is there a chance that you might find enough of one type of person and not enough of the other? And so you have to stop recruitment to one bit and open another bit?

Anne- Marie Greenaway:

Yes.

Adam Smith:

So do you have to then put this on cohorts?

Adam Smith:

Do you say, “Here’s one cohort, and … ?”

Anne- Marie Greenaway:

Yes.

Adam Smith:

Ah. Okay.

Anne- Marie Greenaway:

We’ve been tweaking along the study, and at present I have more men than women recruited in my study.

Adam Smith:

That’s fantastic.

Dr Clare Shaw:

Yeah, that’s interesting.

Anne- Marie Greenaway:

So we’ve changed the criteria to recruit women.

Adam Smith:

Because I happen to know, just because I’m a nerd on these things, I happen to know that there are more women-

Anne- Marie Greenaway:

Women with dementia. [crosstalk 00:16:33]

Adam Smith:

… With or without dementia registered on JDR than there are men.

Anne- Marie Greenaway:

Yes.

Adam Smith:

So they fill in the surveys. So this is an online survey. So do you actually still ring people and ask them to do it?

Anne- Marie Greenaway:

Yes. So my study involves a telephone section, a brief cognitive screen, and then they complete the survey online. So there is contact with participants.

Adam Smith:

Okay. So it’s not anonymized.

Anne- Marie Greenaway:

Faceless, no.

Adam Smith:

Oh, okay. So do you have your study on then twice with different cohorts?

Anne- Marie Greenaway:

Yes. So we have the cognitively healthy arm and then the dementia arm, which includes mild cognitive impairment.

Adam Smith:

So that’s clever then. So Join Dementia Research, and when you put it on in that way, and I guess this is where having the conversation comes in, it allows you to keep pace. So those studies that are looking for, say, age matching, for example, so, “I want a 70 year old with dementia and a 70 year old without,” allows you to flex the criteria to find exactly the kind of people you’re looking for.

Adam Smith:

And so tell me, what’s been your experience of using it? Were you ringing people yesterday? No, it was Sunday yesterday.

Anne- Marie Greenaway:

Yes.

Adam Smith:

Maybe you were, you can get a hold of people on Sunday.

Anne- Marie Greenaway:

Yes, on Sunday. Because people can specify when they would like to be called, and if they say any time, I presume the weekend is okay. And it usually is.

Adam Smith:

Oh, actually, do you know what? I can say this, because I’ve been involved in this too, is I think that’s one of the things you should definitely encourage is, starting to recruit from a register is a bit different to recruiting through a memory clinic, or in the NHS where you’re used to working these nine to five hours. Because of course we know, particularly if you’re looking for people who are maybe not quite so old and haven’t yet reached retirement age, they’re probably busy through the day. Right?

Anne- Marie Greenaway:

Very busy.

Adam Smith:

So, if you want to get a hold of people on the phone, you ring them early evening and weekends. And so there are no rules to Join Dementia Research that says you can’t ring people on a weekend?

Dr Clare Shaw:

No, all we say is when someone signs up on to Join Dementia Research, they put their preference when they would like to be contacted, and how they would like to be contacted. And as part of the researcher training, the researchers are advised to contact the volunteers by their preferred method of contact, albeit email, telephone.

Adam Smith:

So not in the middle of the night, but evenings, weekends when you’re going to get hold of people. Which actually kind of lends itself really to early career researchers’ and students’ way of working …

Anne- Marie Greenaway:

Who don’t sleep.

Adam Smith:

Well, because you’re writing through the day, right? And you’ve got other things to do. So this doesn’t tie you in that way.

Adam Smith:

So what do you do? Do you log in? I’m saying this like I don’t know, right? Just pretend I do. So do you log into a website?

Anne- Marie Greenaway:

So you log into the Join Dementia Research website, and you bring up your study, and then you have a list of your potential participants who you then pre-screen.

Adam Smith:

So you can click on them and view all their information.

Anne- Marie Greenaway:

Their details, yeah. And if they are a match to your study, then you can go on to contact them through their preferred method of contact.

Adam Smith:

So you were doing this yesterday.

Anne- Marie Greenaway:

Yes.

Adam Smith:

So what’s the response like? I mean, you’re phoning somebody, as much as they’ve registered into this, some of these people have got a degenerative condition. How do those phone calls go?

Anne- Marie Greenaway:

I’ve had a really good experience with people, and this is the first time using JDR, so obviously, I was a little bit apprehensive about initial contact. But even when circumstances have changed, people have been very warm and open even though you’ve contacted them and it might be a little bit, you know, touchy, the situation. But they’re open.

Adam Smith:

[crosstalk 00:20:25] because nobody picks up the phone now, right? I mean, who talks on the phone to anybody? You text everybody.

Anne- Marie Greenaway:

Yeah.

Adam Smith:

So getting over that hurdle and picking up the phone for the first time, and even practical things like finding a quiet place to phone from, having a phone number. Do you leave people messages if they don’t answer?

Anne- Marie Greenaway:

I am very careful about what I leave, just in case they haven’t disclosed to family and friends.

Adam Smith:

You’re [crosstalk 00:20:49] your training, right? You’re sat next to Clare, who’s saying, “Don’t … ”

Anne- Marie Greenaway:

Well, I was an ex-dementia adviser prior to my research. So there’s training there that you just don’t disclose unless you know it’s okay to leave a message. So, “It’s Anne-Marie … ”

Adam Smith:

So you phone, and you explain about your study, and positive?

Anne- Marie Greenaway:

Yes. Yes. It’s been really good.

Adam Smith:

That’s fantastic. Is that the same for you, Vicky?

Dr Victoria Shepherd:

Yeah, so I find a lot of the participants, I was contacting the carers, preferred email contact, and so I would make contact initially, mostly through email, and it meant I could provide just a little bit of information upfront, invite the person to contact me either back by email or by telephone, and I could provide further information. It also meant I could then provide an information sheet attached to an email about the study as well if they wanted that next level of information. And a lot of the conversations with the carers who were volunteers was to try and establish if they might be eligible for the study, which often took a bit of a conversation.

Adam Smith:

And I suppose the good thing is, is there’s no rules around this. I mean, I suppose, actually, it can lend itself to whichever way you want to work. Whether you email some information in advance and then follow up with a phone call saying, “Did you get my email?” Or whether you pick up the phone and then email afterwards. The good thing is, is you’ve got both options. And I guess not everybody has email, because there’s some people might have signed up over the phone.

Dr Clare Shaw:

Yeah. So when we’re training researchers that way, if they have an email or their preferred method is by email, et cetera, or, as I said earlier, when volunteers match to a study, if they do have an email account, they can log onto the system and they can physically go in and tick that they’re interested. And that would highlight to Anne-Marie or Vicky that that person is really interested in taking part. And then as a researcher they have five working days. We don’t potentially chuck you off the system if you don’t, but five working days to get back in touch with that volunteer. But one of the key parts when we’re training researchers is telling them not everybody’s got an email account. So if someone’s not ticked that they’re interested, it doesn’t mean they’re interested. It’s just they don’t potentially maybe have an online account.

Adam Smith:

And this isn’t like cold-calling, is it?

Dr Clare Shaw:

No.

Adam Smith:

You’re not phoning people out of the blue. These are all people who are motivated, wanted to sign up, have provided their details, and probably are more annoyed when they don’t get contacted than when they do.

Dr Clare Shaw:

Yeah. The feedback we get from our charity partners is people are waiting to be contacted. Not they’ve been contacted too many times.

Adam Smith:

So coming back to you, Clare, then, so let’s get a little bit into the detail that we started to talk about before. So lots of our listeners, I’m hoping, are Early Career Researchers out there thinking, “Oh my goodness, I had no idea this could be so useful.” So tell me, how do you go about using it?

Dr Clare Shaw:

It’s dead easy. Okay? So if you’re an Early Career Researcher and you want to use JDR, if you go to our website, it’s maybe not the most attractive website, but there is a section on the website for researchers, and then in the section on researchers, there’s a link to a Google form to put some basic information about your study onto that Google form, and that triggers the conversation to start between ourselves and with the researchers. And it tells us a little bit information about your study, about yourself. And then, as I say, my colleague, James, or myself will phone the researcher and start that conversation. So if you submit the form on the Monday, you’ll probably get an email back Tuesday, Wednesday, and the conversation can start that week.

Adam Smith:

That’s quick.

Dr Clare Shaw:

And the other thing to say, it’s free.

Adam Smith:

Well, that was my question.

Dr Clare Shaw:

Yes.

Adam Smith:

Is it free?

Dr Clare Shaw:

It is free. And I think people think, “Oh, that’s amazing. There must be a catch.” You know, that way. But it’s free.

Adam Smith:

So it is free. This is government funded by the Department of Health, and no researchers are charged to use it and no volunteers are charged to register.

Dr Clare Shaw:

No, the only prerequisite that we have for your studies to go on to Join Dementia Research is that it’s got Ethics approval, and that can be university Ethics, or NHS Ethics, and it would benefit from using a registry, and we have permission from the Chief Investigator to use JDR.

Adam Smith:

So how long does it take then? So, as you said, you saw with your example there, you apply on the Monday, you get a phone call a couple of days later. How soon after that do you think before you can start actually getting hold of people?

Dr Clare Shaw:

You could do it in a week.

Adam Smith:

Really?

Dr Clare Shaw:

Depending. If you’ve got your Ethics approval. And the other thing that I probably should have mentioned was …

Adam Smith:

Was training, right?

Dr Clare Shaw:

Yeah. But you can do that at night. These people don’t sleep.

Adam Smith:

Oh, because you don’t have to wait to physically be trained, it’s online.

Dr Clare Shaw:

No, the training moved online in August. We now have the training online, which is, again, when you fill in the form, it’s a trigger for us, and we’ll send out the information about the online training.

Adam Smith:

And then you can check whether they’ve done it.

Dr Clare Shaw:

Yeah, there’s a competency-based test at the end which is pretty straight forward, and if you score seven out of 10, you pass, and then you’ll be issued with a username and password.

Dr Clare Shaw:

So, as I say, [crosstalk 00:26:04] I would like to say a week from start to finish. But depending on capacity. I would always say to someone, “Don’t expect to get it on a week, a couple of weeks, just to [crosstalk 00:26:13].”

Adam Smith:

Because there is, unless things have changed … So my knowledge on this might be [inaudible 00:26:17], that you do have to make sure that you’re recruiting from, this is mentioned in your Ethics, right?

Dr Clare Shaw:

Yeah. So when you submit your Ethics, you have to mention that you’re using Join Dementia Research as a recruitment tool. And it varies. Sometimes people have done it, or they haven’t. And it all varies what stage the Early Career Researcher comes to us. The earlier, the better. The pun on the word, there.

Adam Smith:

So even though it can be done in a week or two, still it’s better to come and seek that advice before.

Dr Clare Shaw:

Yeah.

Adam Smith:

Also, as well, because then you can do the feasibility and say how helpful you think you’re going to be.

Dr Clare Shaw:

Yeah. We could say to Anne-Marie, you know, or Vicky-

Anne- Marie Greenaway:

You did.

Dr Clare Shaw:

Yeah. If you use JDR, we can get you X amount of volunteers.

Adam Smith:

Okay.

Dr Clare Shaw:

But it’s pretty straightforward.

Adam Smith:

And if they’ve already got their Ethics, do they, I mean, because Ethics can be … We released a public podcast a few weeks ago on Ethics. Ethics can be challenging. Right?

Dr Clare Shaw:

A minefield, yeah.

Adam Smith:

Is that a problem, getting the Ethics changes in your experience?

Dr Clare Shaw:

No. If the researchers mention Join Dementia Research in their IRAS form or their university Ethics to start with, that’s fine. If they haven’t, well, obviously, that’s not a problem either. You can submit a non-substantial amendment, and we have templates on our website, so it’s not [crosstalk 00:27:31]

Adam Smith:

So it’s a non-notifiable, non-substantial amendment.

Dr Clare Shaw:

Amendment.

Adam Smith:

So the next time you put in an amendment, you just put that in with it, so it’s no barrier again.

Dr Clare Shaw:

No. Again, it’s fast that way.

Adam Smith:

Fantastic.

Adam Smith:

And I think we’ve already covered, I had this as a question as to what researchers see, but fundamentally you see all the volunteer information, and you can see the notes on conversations that they might have had with others, because of course it’s not unrealistic to think that you might look at somebody on a Monday and they’ve already, Ann Marie had phoned them already the day before, and so you want to be able to see what that conversation went like so you can build up a picture before you phone people.

Dr Victoria Shepherd:

Yeah, I found that note section very helpful. Particularly when, as I say, people’s preferences, they can indicate email or telephone, but often there’s another level behind that preference. So they might say, “Try my email first. If I don’t respond, please give me a call.” So there might be ability to find the details on that.

Dr Victoria Shepherd:

But also when other researchers have been in contact with them, it might be that their circumstances have changed. So, for my particular study, knowing that the carer, perhaps the person that they care for is now moved into a care home, for example, or the person has sadly died, might well change whether you think that they might be suitable for the study or not. So having that level of detail in those notes was very helpful.

Adam Smith:

Honestly, I think, I can’t stress this enough, is having these kind of studies on from Early Career Researchers is really important, because not everybody who signs up to this is looking for a drug trial, or is looking for some kind of intervention in that way. And I think, actually, completing surveys, and giving your opinions, and doing focus group work, or things like this actually can be a nice segway into doing things more substantial.

Dr Clare Shaw:

And the feedback from our volunteers, they like doing these. They don’t all want to be doing the large, big studies.

Adam Smith:

And you can do this without leaving your house, right?

Dr Clare Shaw:

Yes.

Adam Smith:

I mean, because I think that is a barrier. Some people feel like leaving my house, adding extra appointments in can be a challenge.

Adam Smith:

And I’ve met lots of Early Career Researchers, of course, at the AIC last year. We had a few talk to us who’ve said how really helpful this has been. But don’t take my word for it. Victoria and Anne-Marie, what advice, let’s go to Vicky, first of all, what advice would you give for anybody who’s thinking about using the system?

Dr Victoria Shepherd:

So I think knowing whether it’s going to be suitable for your study or not is key. Having a conversation with Join Dementia Research is key. And then once you are recruiting through Join Dementia Research, as I say, looking in detail at those notes before you start contacting them. So you’re informed about the volunteer and their circumstances. And also, a lot of the people that I interviewed for my study, spoke about their experiences of being volunteers on Join Dementia Research, and how much they very much wanted to help in any way. And, in actual fact, when I was discussing eligibility with potential participants and they weren’t eligible, actually disappointing people in some ways that they weren’t going to be suitable was something to bear in mind.

Adam Smith:

Yeah.

Dr Victoria Shepherd:

But the carers I spoke to, spoke about how, actually, they’re quite busy people, they have a lot to do. So actually having that flexibility, being flexible in how you contact them, and if possible, flexible about their participation in the study. So, say, going to their own home for a lot of people felt like a real bonus. They felt able to take part in research because the sort of burden of getting somewhere was minimised.

Adam Smith:

Yeah. And it isn’t to say that people won’t travel. I mean, I’ve seen that people will travel far, you know, as long as considerations into things like covering travel expenses, practicalities are involved. But quite often people are quite happy to come forward and have blood tests, and scan tests, and participating in long-term interventions as well. There’s no rules, is there, around, “It must only be for this period of time.” In fact the rules are, it’s got to have Ethics …

Dr Clare Shaw:

Chief investigator.

Adam Smith:

… Suitable to [inaudible 00:31:25] from a study, you’ve got to do the training and fill in the right paper work, and fundamentally that’s it.

Dr Clare Shaw:

The only other thing that we need to mention is governance. If you don’t have an NHS substantive contract [inaudible 00:31:42] for data protection, we need to have a data sharing agreement with the institution that you’re employed with. So, for example, with the University of Reading or the University of Cardiff, but that’s a one-off data sharing agreement. So when Anne-Marie would come to us to do a study, we would check if we already had that governance in place with the University of Reading, and if we didn’t we would start that process. So if it’s a new university that we haven’t worked with in the past, that’s something just to bear in mind we need. [crosstalk 00:32:11] Sometimes that can take a little bit of time to get together.

Adam Smith:

But they’re used to doing these things, they do them all the time, right?

Dr Clare Shaw:

And now that, as I say, JDR is nearly four years old, most institutions we do have a data sharing agreement. It’s changed its name since GDPR. But we do have a checks and measures just in the governance to make sure people are covered.

Adam Smith:

How about you Anne-Marie? What’s your advice for others?

Anne- Marie Greenaway:

I was the first from my university.

Dr Clare Shaw:

Yes. [crosstalk 00:32:37].

Anne- Marie Greenaway:

So I feel very proud, that I have now opened the doors to all students at the university.

Adam Smith:

That’s good.

Anne- Marie Greenaway:

So score one for me.

Dr Clare Shaw:

And it’s great for us, because we do get repeat business when someone starts using it. The word of mouth, as well, in universities.

Adam Smith:

And you want them to match to studies, right? I mean, this isn’t some private cohort that you’re coveting and keeping to yourself. The whole point here is that people get involved, and this is, I mean, some of my work in the day job is trying to make sure that NHS care pathways are promoting and telling people about this so that they can become involved. And that is, I know something we ask researchers to do, that if you’re going to take people out, you’ll try and play a role in getting people to come back in. So if you do find other study participants through other sources, you might tell them how beneficial JDR is to them.

Dr Clare Shaw:

Oh, yes.

Adam Smith:

Getting that plug in there.

Adam Smith:

Well, do you know what? I think, honestly, I had a couple of other questions, but we’ve covered them throughout this conversation. So I think, clearly, here, the strong messages is, is Join Dementia Research is there for everybody.

Dr Clare Shaw:

It’s free.

Adam Smith:

It’s free. We should all make use of it. If you’re out there in the UK. Ah, that is a point. So a lot of our listeners aren’t only in the UK.

Dr Clare Shaw:

Ah.

Adam Smith:

If I work in the States, can I recruit from this?

Dr Clare Shaw:

No.

Adam Smith:

No?

Dr Clare Shaw:

Unfortunately not.

Adam Smith:

Not even if I’ve got Ethics in the States? And it’s a survey?

Dr Clare Shaw:

It has to be UK ethics.

Adam Smith:

Ah. So that’s a bit of a challenge. Maybe we should look at how we can broaden that out.

Dr Clare Shaw:

UK Ethics is hard enough, Adam. Maybe in the future we could look to see, if you had Ethics approval in America, could you recruit? We don’t have …

Adam Smith:

So, anybody overseas, if you find a UK collaborator …

Dr Clare Shaw:

Yes.

Adam Smith:

Anne-Marie and Vicky are very open to recruiting to your study from across the UK.

Adam Smith:

But actually what we should say is, is that this, obviously, Join Dementia Research applies to the UK. So that’s England, Wales, Northern Ireland, Scotland, the Channel Islands, and the Isle of Man.

Dr Clare Shaw:

Yes.

Adam Smith:

They can all use it. But there are similar registers in other countries as well. So you do in the US, of course, you’ve got Trial Match. I know there’s systems in the Netherlands. I’m working with colleagues in Sydney right now to set up something there called Step Up for Dementia Research, which will based on the same principles from Join Dementia Research in the UK.

Adam Smith:

So, by all means, have a look around. Usually, the local charity will play a part in this, so they might be able to signpost you.

Adam Smith:

Okay, it’s time to end today’s podcast recording. I’d like to thank our panellists, Clare, Anne-Marie, and Victoria. Is there any final points you’d like to add before we move along? No?

Dr Clare Shaw:

There’s one other thing. When I speak to researchers, telling them about JDR, I say, “Why wouldn’t you use JDR?” You know, I think put the shoe on the other foot, I don’t think there’s reasons why you wouldn’t want to have this ready-made list of people that want to take part in research.

Adam Smith:

Now I happen to know you’re all on social media, as well. So what’s your Twitter names, so if people want to reach out to you, and get in touch, and ask questions? Do you remember them?

Dr Clare Shaw:

No, it’ll be somewhere. It’s not intuitive. It’s got lots of numbers.

Adam Smith:

Okay, well, Clare’s will be in the bio that’s published on the website. Anne-Marie, do you remember yours?

Anne- Marie Greenaway:

@amg_phd.

Adam Smith:

Fantastic.

Dr Victoria Shepherd:

And I’m @vickylshepherd, and I also tweet through @decisionstudy.

Dr Clare Shaw:

I can now say mine. Mine is @claresh4165231. That’s got a ring to it, hasn’t it?

Adam Smith:

That’s a snappy name.

Adam Smith:

Thank you very much, everybody. If you’ve got anything to add on this topic, please do post your comments in the forum or on our website, or do drop us a line using the hashtag #ECRdementia through Twitter. And, as I said, we’ve got everybody’s, all of our panellists’, Twitter names, and I know they’re all happy to take questions as well. And we’ve also got profiles on all of our panellists, who will be featured on the website. So thank you very much.

Adam Smith:

Finally, please remember to share, subscribe, and leave a review on our podcast through SoundCloud, iTunes, and Spotify.

Adam Smith:

If you would like to use Join Dementia Research, I think the website is www.joineddementiaresearch.nihr.ac.uk, and Clare will help you in any way she can.

Adam Smith:

Thank you very much and thank you again to all of our panellists.

Anne- Marie Greenaway:

Thank you.

Dr Clare Shaw:

Thank you.

Dr Victoria Shepherd:

Thank you.

Voice Over:

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

END


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