A couple of months ago, Kelly McGorm joined our Facebook group and we started up a conversation about her work recruiting for, and supporting the people participating in the ENDIA Study. The ENDIA study is Australia’s largest study into the cause of type 1 diabetes and is currently recruiting eligible families. (Visit the ANZCTR, their Website or Facebook page for more information). The ENDIA research team seems to be exploring lots of different ways to engage their participants, and so we wanted to find out more. We spoke with Kelly, as well as Bill Nash, a dad living with Type 1 diabetes who got involved in the ENDIA Study consumer group, to learn more from both the researcher and consumer perspective.
In Part 1 of our discussion, we talk about getting people into research and why Bill got involved, meeting people’s expectations of medical research and the use of video and social media to engage people in research. In Part 2, we will explore what is happening in the ENDIA Study specifically, and the value of consumer involvement in the research from each of their perspectives.
Bill, sometimes it is hard to engage the public in research. What motivated you to get involved?
Bill: I think the problem with a condition like diabetes is that unlike cancer, diabetes will kill me if I don’t look after myself. But if I look after myself, I could live a long life. I’m 37 years in, I’m going okay. I’ve managed through thick and thin to do it without needing a cure, if you like. I think people like me, maybe, have got a bit lazy with it. And I just think, well I’ve dealt with the struggle, I don’t need a cure. So I think maybe it’s hard to get someone like myself to get involved in research.
But, above all, I would love it if there were a way for my kids to be able to be tested properly and maybe if there were like a vaccination or something to prevent developing Type 1 Diabetes so that you never need a cure. I’m really interested to get involved because I’ve got kids. But for other people, there’s less desire for it maybe.
Something I’ve noticed with diabetes, is people’s expectations around research. I moved on to Facebook, as unfortunately, that is often the only way to get any good information on pumps, research, etc. But people incorrectly expect an almost instant result from research. They see some research produce a paper that says we may have a cure, so they want it next month. But if you’re going to get involved in a study, your expectations have to be realistic.
There needs to be better explanations of what happens within these studies so that it’s really clear what people need to do.
What would you suggest?
Bill: Rather than demanding that people do X-Y-Z, we need to explain that if they do these things, the information or data being collected from them is going to be useful. People need to be given a really clear explanation that, because of the way the research process works, sometimes they can’t be given particular information. Because of peer review, assessment, etc people need to be told the long timeframes for some studies and when results might come out.
So expectation management is important?
Bill: A lot of people, especially in America, want results yesterday. And they want research secure, and with no holes in it. It’s never going to happen. I’ve got into arguments on Facebook telling people it doesn’t happen like that. And they go, oh well we see it on TV all the time. And I think that’s a key to the problem. Reality TV shows can make a house in a week. So they’re expecting a cure within a week if you get involved in a study. Then people drop out of studies because they’ve got sick of it or can’t be bothered anymore. They don’t understand the process. It was never explained to them.
My mum’s a pharmacist, and we have associates in the medical industry. I was involved in a lot of research in my teens. 20, 25, or 30 years ago we were given almost no information whatsoever about what was going on. But we did it because we wanted to help. And I’m still doing things like this because I want to help. But I think you just don’t get any realistic information. And realistic time frames.
I’ve been learning so much from Kelly about ethics, publishing results and publishing information; I didn’t understand quite what was involved. I think the people that are involved need to have information and you need to somehow be able to say ‘look we’re moving along. We’re making positive steps forward, but we can’t say too much yet because it has to be ethically and peer reviewed.’ And explain what a peer review means.
I’ve noticed another thing in diabetes is all these diets like keto-diets and all that sort of stuff. There’s almost no peer reviewed papers. That’s my biggest thing, if I’m going to do something, I want a peer reviewed paper to say that it’s been researched, to say that it works or it doesn’t. And here’s the limitations. Here’s who it might work for, here’s who it doesn’t. People don’t understand what a peer reviewed paper is. So I think there needs to be more information like that.
So Bill, what methods would you use to help educate people about the research process, and get them the information they need to understand about a research study?
Bill: I think you can do it, right from the start. Say for example we’re looking for recruitment to a study like ENDIA… I think because everyone is on a computer, Youtube and video clips are easy. There’s not a bunch of reading. I think an easy way is to make a five minute introduction clip on what the study is … so very basic details on what they’re trying to do, a timeline, and some very basic requirements with a direct clickable link on each of those things which further explain it.
So for example, for this study, you’re a family or you’re a couple and you’re diabetic. You’ve heard about the study from a leaflet in your doctor’s office or elsewhere. You go home, you click on Youtube, you get a free five or seven minute video (because that’s about as long as people have an interest in it). And then you’ve put direct clickable links on that video to learn more. For example, if there’s a timeline, the study team has to have put enough thought into it to say, “Right, this is the reality. It’s going to take us at least this amount of time, if we get this many numbers in the study. We can’t produce results until we’ve got enough of this, to do this. And we might be able to produce results at a halfway point, or a quarter point”, whatever it’s going to be.
Then on the next video, talk about what people need to do. Another five or ten minute video on your requirement for the study. You don’t need to bombard them with all the finer details, but enough to get them the knowledge that they need so that they can say ‘I’ve got this much time or I don’t have this much time’ or all that sort of stuff.
There can be another video which sets out in really clear language, how the results are going to be published, and why they can’t have results in a year, i.e. because you need to have enough people, you need to have enough tests done, you need to have enough participants to get the correct results, or the correct data to make the results. I think with a lot of these things, people just don’t understand that it’s not an overnight thing. Even if there is a cure found, or a vaccination or whatever is found in our situation, that vaccination then has to be produced, tested, made ready for sale. It has to go through the approval process.
People just think it’s going to happen within the month … it can’t. People don’t understand that. 
The news never says “We’ve had this discovery that in ten years time might be a treatment” because they know it doesn’t engage people. As soon as people hear ‘ten years’ they switch off.
Kelly: In diabetes, that five-year figure keeps coming up. The number of times I’ve heard that there might be a cure in five years… and then in five years no cure. And so it seems to go on.
Bill: So I think the problem with that side of it is that for so long in diabetes we’ve been promised a cure. I remember when I was 11 years old my mum said her sister’s studying drugs and she told mum that they had a cure. Now whether that cure was actually going to work or not, she developed some stuff to say that there could be a cure. And five years later: “Oh we’re still working on it”. Another five years and: “Oh yeah, it’s still going”. She’s not tricking us or anything. I think it’s more that her company realized they want to keep producing insulin, not a cure.
But regardless of that you keep hearing these five-year, three year things, but there’s no information linked to that either. So it’s that news-bite thing that is a problem. Where people … because of Facebook, because of media and social media these days, anyone can put anything up. Once a month I see on Facebook: if you eat an all fruit diet, you’ll cure diabetes. If you eat an LTO diet, you’ll never have a high sugar again. All these sort of things. They’re just people saying these things because they want to sell a book or a health plan or a diet.
So, unfortunately, I think that regardless of whether we do the most amazing presentation or do everything to the letter, we’re always going to be up against social media. And that’s why I think these short little videos to start with might better explain things and be a bit of an advantage.
I don’t watch television anymore. I watch Youtube because they’re often a ten minute clip, whether it’s cars or whether it’s fishing. My kids who are 7 and 9 will sit on my lap and watch with me. And once the ten minute clip is over, their ten minute attention span is up. They’re gone. I can’t concentrate anymore, because I think I’ve trained my brain to that Youtube video clip style thing, which is why I think a series of short videos might help. You might be producing an hour of information, but they’re short, five to ten minute clips.
Kelly: We have taken this idea on board and have a number of short videos on the ENDIA website and on our Facebook page explaining the study and providing updates. The NHMRC also recently made a short video featuring one of our ENDIA families outlining their experiences of participating in ENDIA; we send the link to potential families. Unfortunately, one of the problems we have as a research project with YouTube is that ethics won’t let us have an account. This is because one clip links on to another clip and they feel the ethical review is problematic. For some reason Vimeo seems OK.
Bill, what other ideas to you have for providing information in a way people want to digest it?
Bill: Another good thing I’ve found is podcasts. There’s three or four American diabetes ones. They’ve got products linked to them and they’re not necessarily ideal for studies because the ethics would be incredibly difficult to control. Having said that though, it would be another link you could have … So it’s just like downloading a podcast but it’s not a promotional thing.
Kelly: Like a TED talk?
Bill: Yeah a bit like a TED talk. Have someone talking through the study and what’s expected. So it’d be almost like a Youtube clip, but it’s audio. So it’s, say, two or three people speaking about the introduction to the study, what you want to achieve out of it, the realities, the timeline.
Kelly: I really like that idea. Maybe we could do an ENDIA podcast series?
I went to the diabetes congress earlier in the year and was on a stool trying to promote the study like a shop assistant. I met a lady with Diabetes Research WA who goes up to people at conferences and just does a quick video chat with them asking, “So, what have you learned from this conference? What’s your take home message for families involved in this study?” And I thought, “What a great idea.”
By the end of the conference, I tracked down one of our investigators and put him on the spot and said, “At the end of this 2018 Australian Diabetes Congress, what is the take home message for ENDIA families”. He gave a great answer. I sent it to ethics and after a while they approved it! So it’s sitting on our Facebook page now.
Bill: The podcast, I think, could work really, really well. For a podcast to work, you need a group of people that want to listen to it. You’re not going to get the podcast people at the start of the study, but it would be a maintenance thing.
Kelly: It’s a great tool to keep the community involved and (hopefully) interested.
Bill: Yeah. It’s a way to keep the people engaged, right? And for the ENDIA Study, you could mention all the babies that are being introduced into this study, mention some birthdays and you also say, talk about parts of the study like ‘It’s really good to see people doing XYZ’ or ‘we collected a little bit of data from this group for another part of the study.’ You obviously can’t say results, but you can keep people interested and coming back. I think you can keep people engaged for a little bit longer because they’re getting tidbits of information, and they feel like they’re even more personally part of the study.
Kelly: Everything that goes out to participants or the public from the ENDIA Study team needs to have ethical review; every Facebook post, newsletter, etc. We proposed an Instagram account and it was not approved by ethics (for similar reasons to the YouTube clips linking to other links etc). However, we have noted other studies have Instagram accounts, so the compromise was to submit all our proposed posts to ethics for review before posting. So new ideas and technology, like the podcast for example, might be tricky to get approved as all the scripts would need to be ethically reviewed. But, it’s certainly worth trying.
Thanks to Bill and Kelly for sharing their thoughts so far. In Part 2 we talk more specifically about the ENDIA study and what the team are doing to interact with their participants and broader community.
