Engagement in the ENDIA study Bill and Kelly

Recently, we spoke with Kelly (part of the research team) and Bill (a dad with type 1 diabetes) about consumer engagement in the ENDIA study, Australia’s largest study into the cause of type 1 diabetes, as a path to improve study recruitment, engagement and retention. In Part 1 of this interview we explored the issues had encouraging people to get involved in research, expectation management, and tools thad might help better educate people about research and studies in a general way.

In the final Part 2, we discuss what’s happening in terms of participant engagement in the ENDIA Study, and the value Bill and others with lived experience of type 1 diabetes have added to the research project.

Kelly, to start with, can you tell us a little about what you are doing to engage people in the ENDIA Study, and why?

Kelly: Let’s start with Why. The main reason we are trying to engage people is that the ENDIA Study is a longitudinal study (ie we collect information from the same people over a long period of time).  We want to engage people to start and stay in the study, and are trying to meet expectations about how long it will actually take before we can have some definitive results. So we want people to be happy, we want people to be satisfied with their research experience and tell other people about it if they have a good experience, which is good for everyone doing research.

So what kinds of things are you doing in terms of outreach and engagement?

Engagement in the ENDIA study instagramKelly: We have the Facebook account and we post to that every three days, along with some adhoc posts. If someone gets a grant or if there is a significant finding, we’ll post as soon as it’s available (and had ethical review). The most successful engagement has been families sending me pictures of their children to share with the ENDIA community. I can’t keep up on social media with all the beautiful photos families have sent me.

We have the Instagram account (@ENDIAstudy) because we’re appealing to younger families. We are finding that that people are probably more interested in photos, hashtags and short, sharp messages. So we’re trying a different tactic with that.

Twitter, we’re not having … it’s too hard with ethics. We can’t pre-empt tweets. But that’s just something that perhaps we should be looking further into; some pre-scripted messages.

Bill: Twitter’s nowhere near as a welcoming space as Instagram or Facebook. There’s a lot of content, and no matter what you’re interested in on Twitter, it’s a more unpleasant experience than any other social media that I’ve been involved in. I wouldn’t bother about Twitter.

So interestingly, there’s a lot of health chats on Twitter and a lot of patient communities on Twitter. So Bill, you haven’t found them of any support?

Bill: No, I haven’t. But I’ve found everything that I find on Twitter re diabetes, is more about people selling a miracle cure. I find Instagram and Facebook more welcoming as you can filter a lot of the rubbish, where as with Twitter, you just get bombarded.

With respect to Instagram, we find people engage with it the most with likes and comments, but it doesn’t necessarily drive activity. What’s been your experience Kelly?

Kelly: I’ve not seen one recruit from Instagram. I boosted a post and saw a lot of likes and comments. At the last JDRF walk, and for Fathers Day, we thought we would take what we had learned from Bill and one of the other dads in the study, and boost a post to promote men involved in the study. But we didn’t have one inquiry (that we know of; although people tend to hear about us from more than one route). We are aware that people might see a post, but when they are told about ENDIA by their health professional, this rings bells with them. Hearing about the study through various means tend to give it more validity and meaning.

Bill: I think Instagram is a bit like a podcast. Once you’ve got your participants, Instagram is wonderful because it’s more of a visual thing, right? It’s a wonderful place to put the pictures of new babies, a picture of someone turning six and that they’ve been involved in the study for the whole six years. But you don’t get recruits from that. Instagram is less linkable and you get fewer ads from Instagram.

If you typed diabetes in Facebook, you’d get all this stuff up. With Instagram, it doesn’t work like that. Each is a tool, and you’ve got to use the tool the right way.

So I think Facebook is the tool for recruitment and advertising. Instagram is a tool for retaining people’s interest. Same as a podcast is a tool for retaining and informing, while YouTube or video is more a tool for recruitment and education.

Kelly, we hear ethics committees can sometimes have a problem with using some of these social tools. What has your experience been like on the ENDIA study?

Kelly: We’ve had to fight tooth and nail for an Instagram account as at first, the ethics committee decision was we couldn’t have one. They felt one hashtag, say #diabetes would lead to many other things that the committee can’t ethically approve. We managed to reach a compromise in that we could have an account as long as all our posts are submitted for ethical review.

Social media is relatively new and rather fraught from an ethical standpoint. To my knowledge there are no Australian guidelines around the use of social media in research so I understand their concern about having to approve such content.

We can’t use YouTube for the same reason of one clip linking on to another clip. We do have individual content on Vimeo, and I’m not sure why that’s okay, but I think it’s because Vimeo doesn’t link through to other content.

Bill:  Some parties, because of the ethics side of it, they won’t let you do this stuff. But my idea is that for a lot of stuff, as once again, because of social media, reality TV shows, etc, people don’t have the attention span anymore to pick up a magazine or big information pamphlet and go through it.

I sit there with a tablet while I’m cooking dinner, with the kids doing their little maths problems on a little Youtube clip. Though I don’t like it, that’s the way they’re doing homework. My seven year old does five minute math problems on this education app on the tablet and just presses the buttons. So he’s already been trained to accept that.

Short videos might be a little less daunting than a big thick information pamphlet. I would guarantee that only 10 or 15 per cent of people would actually be prepared to sit down and read the detailed information cover to cover. And I would suspect that with videos, generally, more people will be likely to make a decision a lot quicker and you’ll know they’re interested or not in a day. Clips are easier to digest. Of course, you still need that detailed information for the people that really want to read it.

Kelly: Yes, that is an ethical requirement that everything is detailed in writing. But taking Bill’s perspective on board, we do have a video on our website that outlines the study, including Lead Investigator, Professor Jenny Couper, outlining the study and some of our families providing their experiences.

Beside social mMedia, how else do you engage with the study participants Kelly?

Kelly: We send a quarterly newsletter to participants and other stakeholders, like some of the referring health professionals and study coordinators, by email. If people aren’t on email or haven’t provided their email, we print copies out for coordinators to give families at their next visit. One of our investigators is very keen that we print out a glossy newsletter every quarter, but we don’t have a huge budget for that sort of thing and most people are online. I’m not convinced that would be the best use of resources.

Bill: No. I agree.

Kelly: We probably need to be doing a bit more with health professionals. Quarterly, we send out an email that the clinical leads, the steering committee members, put out to their colleagues updating them on how many people have been recruited to the study and just the basic data about how many babies have been born.

I don’t know what you think Bill, but we update how many pregnancies/babies have been recruited and how many babies have been born during the study. But we haven’t put in the newsletters how many children have been diagnosed with type 1 diabetes so far in this study. Some people are interested, but I don’t think I’d put that in the general newsletter.

Bill: I wouldn’t.  Of all the things I fear in life is that one of my boys is going to become diabetic, and I don’t think that’s necessarily a thing that would help retain participants. If people see someone has been diagnosed, they might think “I’ll jump out of the study because it’s not helping.” So I don’t think that is a good idea.

Kelly: We also do have a consumer group. It’s made up of people that have put up their hand or have emailed me to express their interest or responded to our evaluation. The link to the survey on Survey Monkey goes out with the newsletter and occasionally on a Facebook post so if anyone has anything they want to say about the study, it goes to a neutral point, and they can do so anonymously. Although, amazingly, all we have received is positive feedback. Participant comments don’t go back to the coordinators unless it’s a named lovely compliment, then we’ll send it on to them as who doesn’t appreciate positive feedback about the good work they do? So people have the option at least once a quarter to volunteer for the consumer group.

And what does that group do?

Engagement in the ENDIA study teethKelly: A recent example is that we just got ethical approval to include the collection of baby teeth in our protocol. We’ve found some evidence that the exposures from as early as first trimester pregnancy can be measured in baby teeth, so that can actually give us some amazing information.  As some of our participants are now 6 years old, they are starting to lose their teeth.

We wanted to get people’s perspective on whether they would be willing to part with their children’s baby teeth, since many keep them. So, we put this question to our consumer group. The feedback came back that it would be alright to collect teeth, except for the first tooth, perhaps. It was the best response we’ve had so far of questions I’ve put to the group because I think it was quite accessible and people now feel an investment in that idea.

Some people had questions about the process of collecting teeth and how they would be stored, so one of the ENDIA Investigators responded along with a published paper explaining some of the science. We got some really nice feedback about the feedback! So it was a nice information loop.

I also received some feedback from people in the consumer group that they were kind of keen to meet other parents with type 1 diabetes. So we tried using a Google group, where everyone can see each other, who’s on the group, etc. We had a couple of people drop out when I set that up. Some only agreed to be emailed questions individually. Maybe this isn’t the best approach. I don’t find the consumer group initiates discussions as yet. Perhaps we are still building a rapport.

There’s still a lot of people who don’t know about the consumer group, because we’ve just reached 1200 people in the study. People have come into the study at various stages over the last 6 years. So, I need to keep up a presence. Unfortunately, I don’t always get the input I need from the lead investigators to inform our participants and that is another battle; to get everyone in the team to see the value of consumer input.

I’m still playing around a little bit with the best way to communicate with families and how to get their feedback.

Bill: But also I think that is something you could do with videos … to say how we communicate with everyone, this is what we do. This would be a thing that would grow and change as the study grows and changes and as social media, or ways of communicating with people grows and changes. I don’t think you can ever say you got it right. At the start of the study, or as things come up, you say you produced another five minute video that goes out with the newsletter, or whatever, with the link saying “Here’s what we’re doing, this is the way we’re doing it, if you want to get involved, jump on, if not that’s fine”.

So Bill, a question for you. You’re obviously part of the consumer group. First, how did you hear about the study, and then, why did you get involved with this group?

Bill: I ride my bike to raise money for cancer survivors for a Cancer Voices group. One of the ladies that is part of that group told me about the study. She is a lovely person, and every time she is involved in something where there’s diabetes mentioned, I get an email.

Unfortunately, my boys are just outside of the timing, so I missed out enrolling in the study. But, because I desperately want to help to find a way for my boys to hopefully avoid type 1 diabetes, I got involved.

My mum and dad are country people, and you just get involved in things whether you want to or not. So I met with Kelly one day. She explained what was going on and asked if I could help, and I did.

Kelly: From a recruitment perspective, it’s quite hard to find and engage the dads, so we were particularly keen to have Bill’s perspective. There’s a bunch of reasons why it’s tricky to find dads that are having a baby… there is no one place dads go to and no specific group. Whereas, if you are looking for pregnant women, you go to the prenatal clinic, and there they are. That’s when we started thinking about other avenues like promoting to primary care and via social media.

So Bill, you just said something I’m intrigued by. You mentioned the fact that country folk just get involved. To what extent do you see a difference between country vs. city in that regard? Is that something that could be capitalized on in research, do you think?

Bill: I just think it’s a different attitude, and it’s much different now than when my mum and dad had me, 42 years ago. Back then there was a distinct difference between country and city. There was no internet.  Sometimes you had to travel hours to see someone. The community was everything. The mental attitude was that people always were all in, for the community. On your weekends, everyone in your little town was involved in sport, or community events. In the city, it’s not like that. But, now that we have technology and it’s difficult to get people to talk away from their mobile phone, I don’t know that it’s much different in the country to the city anymore.

Kelly: We’ve got a regional program and since it started two years ago, it’s been very successful; we’ve recruited way more country people than we expected to. So maybe there is something to that country attitude. I’ve also noticed that people with type 1 are just that little bit more driven to be involved in research.

Bill: We are driven because we have to keep ourselves alive. If you’re going to survive, and if you’re going to have longevity, you have be pretty motivated, regardless of where you live.

So what do you get out of being involved in this, Bill?

Engagement in the ENDIA study dads

Bill: For me, I like helping people. I’m happy to do this. I’ve always done stuff, like St. Johns Ambulance. I don’t do it to get paid, and I’m hoping, once again, that in the near future (and I’m realistic about time frames), that my kids don’t get it yet, and if they are going to get it, that there’s a way to barely detect it and the potential to stop it happening. Whether or not that’s going to happen, that’s why I’m involved. I’m hoping that some of these things that I help with, get some more dads involved because if there’s 60% women and 26% men (and 14% siblings of the babies), we need a more balanced picture; we need more men involved.

I’m hoping, that even with the 10% of what I do or what I talk about, its 10% that you didn’t have. It takes a community, it’s not just one person doing it all. It takes a group to make it work, and I’m just part of the group.

Kelly: We have an annual meeting where the entire national team gets together and Bill came to it this February. The science was a bit bamboozling, but thanks to Bill’s feedback, and the coordinators feedback, we are looking at how we might change the format for the symposium. While there’s lots of other people involved, consumer involvement has certainly made an impact on the science-y people, on how they talk about what they are doing.

Bill: It’s also a huge privilege for me, to be able to see that symposium and for me to see how that was presented, and then think to myself, how would I understand it. Though I don’t expect to understand 70% of it, there was still a lot of it in there that I got quite a bit out of. I was able to speak to these people that I would never, ever get to talk to, and they even got to talk to me for another perspective, just because I was invited and I was there.

What do you think about the skills that you need, Bill, to add value to the researchers?

Bill: I think it’s more my view of how things happen. I’m not the person. I think if there was ten to fifteen, to twenty of me, of people that are interested like me involved, we’d all have different ideas. I don’t think I’m special in any way, shape, or form. I think it’s just that I’ve been involved in research and development a lot in my life, and so has my dad.

One day I might mention to Kelly, do you reckon we could try this? And she`ll look at me like I’m on another planet. But that’s the thing. When you have someone from the outside with a different view looking at what you are doing, you get ideas you don’t see because you are in it.

You can’t just let the researchers run the research because they want a very narrow result. They might not understand the wider context. They need the data, they need the people supplying the data, so they need to have an appreciation of what people think and their experience of things.

I’m not anything special. I’m just another person to bounce ideas off.

Kelly: It’s the lived experience you bring.

Bill: Once again, it’s just another voice that otherwise, if I wasn’t riding my bike and racing for this cancer team, I would have never heard about it because we are never having another child, ever again.  But I still feel like I can help, and I want to help. I want to be involved.

Janelle: Congratulations to you Bill for that attitude. We need more of you.

Kelly: Yeah, we want to clone him.

Bill: I’m sure there are hundreds of thousands of people, like me, but they aren’t given the opportunity, because they slip through the cracks, or don’t hear about it. It’s more often or not, the random introductions, or the random meetings are the way you get these things happening.

So one last question. You are both on a learning journey on how to work together, and do this… Kelly, what do you hope is next in terms of your consumer engagement, and how that might affect the study, and Bill, what are you looking for out of your involvement?

Kelly: Well I guess for me the next step, maybe is to make the consumer group feel a little bit more empowered, rather than just waiting for a question. Nothing is initiated by the group, they just respond to a question. That might be because the study is already very demanding or because we still building that rapport. For the parents of young children, there’s a lot going on. We are very lucky to have them in the first place, so how can I help them, help us, is my query. Perhaps I need to put this to the group!

Another thing that I’m really keen to focus on, is what information trial participants want to receive from us. If we don’t have a paper published, what can we be feeding back, on how regular of a basis, to keep them interested and feel like they are getting something back out of it.

Bill: I’m hoping that my involvement can assist Kelly and the group to move it forward, whether that be recruitment, or how we keep everyone involved.

Kelly: I think that’ll be the real focus for us next year when recruitment is completed; how do we keep people informed and engaged?


Thanks to Kelly and Bill for sharing their time and experience with us. We are going to keep in touch with this team, and share more of their adventures in the future we hope. As an example, since this interview, the research teams’s phlebotomist (blood draw expert), Bill and another consumer have been leading an application through the Women’s and Children’s Hospital to obtain funds for virtual reality headsets to help distract the study’s little people from their blood tests. The team is looking forward to the consumer engagement and perspectives on how that impacts on kids’ and parents’ stress and discomfort, assuming they can raise the money.

For noting, these are not a sponsored posts about the ENDIA Study, and we have no financial relationship with the ENDIA Study at the time of this post. We are sharing this interview in the hope it sparks ideas with the public and researchers about how to engage with each other, and the need for the public to get involved in medical research. If you have questions about the ENDIA Study specifically, please visit their website.


If you are a research team or health consumer involved in research that is happy to share your story for others to learn from, contact us. For anyone with questions or an interest in getting more involved in research, consider joining our Facebook Group, our database, signing up for our newsletter or just picking up the phone to discuss with us your interests.


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