As I opened up the latest round of applications for consumer support scholarships (to attend the 2022 Australian Clinical Trials Alliance (ACTA) annual scientific meeting (ASM)), I was reminded by one of our Research Gamechangers community, Joanne Baumgartner, that the 2018 ACTA ASM was her first foray into the clinical trials space as a consumer representative. It also happened to be the first year ACTA made available some free consumer passes to their ASM (which they have continued to do since).
From ACTA’s perspective, providing free passes to consumers to attend 2018 ASM was highly valuable. The number one consistent piece of feedback they received from attendees of the 2018 ACTA Summit was the importance of reinforcing consumer involvement in clinical trials from the very beginning. And, consumer input at the ASM to the question ‘where next for consumer engagement?’ ultimately helped lead to the development of the CT:IQ/ACTA Consumer Involvement Toolkit. That toolkit is now freely available and continues to be built on as a resource for researchers and consumers to involve consumers in trials.
With the CCReW Conference Support Scholarship applications opening for the 2022 ACTA ASM, I thought it would be great timing to catch up with Joanne, and understand what value she derived as a consumer from being supported with a free pass from ACTA to attend the 2018 ACTA ASM.
Joanne, can you share with us a little about your background, and what led you to apply for a free consumer pass to attend the 2018 ACTA ASM?
I’ve been involved with breast cancer survivors for a long time. I’d been at The Canberra Hospital and ACT Health for 10 years as a consumer rep on various committees, including for the Cancer Centre at The Canberra Hospital during its construction, and the “BreastScreen” Committee with ACT Health .
I hadn’t done much nationally but was starting to do some Australian Commission on Safety and Quality in Health consumer work. I was looking for a change of direction in my consumer work.
I've had two brothers and a sister with cancer, and a sister’s friend that tried desperately to get on trial. So, I had a fair amount of experience of people, mostly with cancer, trying to get on trials and wouldn't. I’ve also had various health conditions and taken part in research projects myself.
So, when I saw the ACTA ASM opportunity, I thought it might be a good change for me to get into clinical trials.
Had you been to a conference before?
I’ve been to and had presented at conferences in the past for other work I was involved in, so I knew what they were like.
What was it like attending the ACTA ASM?
It was good for me to find I could actually speak up during the conference and be allowed to do that. And I got good positive feedback from researchers, doctors, all sorts of people at the conference, which was really encouraging.
What did attending the conference lead to for you?
At the conference, I went around talking to all the exhibitors on stands. I met Leanne Weekes, who was the lead for CT:IQ at the time, and we talked. Leanne had been listening to me through the conference asking my questions and had like the way I did it. She asked me to apply to be a consumer representative with CT:IQ. If I hadn’t been there and spoken with her, I wouldn’t even known about CT:IQ or that opportunity.
After the conference, CT:IQ flew me to Melbourne to a steering committee meeting, and from there, I was put on the Early Phase Clinical Trials Best Practice project team as the consumer rep, to inform the section on participants. That was a good experience. It was hard, because I wasn’t used to working with clinical trials research and project managers. It was a big learning curve, and even now, I don’t even have the right words to describe the different types of trials and participants I learned about. But I learned quite a bit about how trials work.
ACTA also brought me to
Sydney a few time for workshops related to consumer engagement for clinical
trials.
I’ve done some work with the Consumer Health Forum, and are part of their Research Special Interest Group. I am now on a research grant review committee for the Heart Foundation, and became involved with the George Institute’s Join Us register as a result of meeting them at the CT:IQ Steering Committee meeting.
Getting that knowledge about clinical trials processes has given me the confidence and opportunity to apply for other things – it has added to my consumer CV. Researchers sort of trusted me and empowered me to be able to contribute as a partner, rather than a participant. I had a background of fighting for myself, and you’ve ultimately got to fight for yourself – your right to be there sometimes.
That knowledge of research has also been useful in other committee work I’m involved in as a consumer, like the MBS review and a Prosthesis List Clinical Advisory Group.
What would you say to a consumer who was thinking about going to the ACTA ASM, or something like that, but aren’t sure if they should?
I’d say, go and play it by ear. Be engulfed in any consumer groups, get to know other people. When I first got there (the 2018 ASM), I didn’t know anyone. It was a little bit daunting. But I think I just sort of put my hand up and jumped up anyway. That seemed to be accepted, so I kept doing that. And I did that before I met any other consumers. Then we had a breakfast with consumers and that was good.
Go and have some discussion with people in between sessions at morning tea and breaks. It’s just as important to listen, as to get into conversation with people. Ask questions, maybe think ahead about a few ideas you might like to share should the opportunity arise. Ideas will come from the talks too.
As talks go on, I think you find there are things you want to say, to contribute to or get involved in. It is important to be positive, not like ‘I can’t do this or that’. Sometimes people will do the wrong things, but its good to take a more positive attitude. Put forward a point of view of what happens in the real world. Sometimes researchers know what is actually happening but share it anyway in a way that you are looking for a solution, not just presenting a problem.
Generally, people have come up to me at a conference and said ‘hello, how are you?’. I have crutches and people would come up offering to help. They were generally nice and welcoming. However, be prepared that not everyone wants to talk to you. And that’s a good thing.
Do you think it is important for consumers to attend conferences?
Yes, I think it’s important to get involved in conferences, even it is just to let researchers and other people involved know who you are, what you are like.
There’s lots of learning to
do, so keep an open mind to how things work, who’s there, and what’s available.
It’s one of those things that when you meet people, and find connections, opportunities start to come from that.
Could you have gone to the 2018 ACTA if registration wasn’t free?
No, I wouldn’t have been
able to go in 2018 without funding and I won’t be able to go this year without
funding.
I live on a pension and
only receive payments occasionally for the consumer work I do.
In the past I was sent to conferences by my university and organisations that I belong to as a consumer representative.
Would you go to another ACTA ASM?
I would love to go again and have applied for scholarships.
Many thanks to Joanne for sharing these insights, and for your ongoing contributions to the health and research sectors. I hope these insights will help any other consumers who might be wondering if they should attend a conference, as well as provide evidence to conference organisers about the value of affordable, accessible conferences to consumers for building their knowledge, confidence, networks and opportunity to get involved in and contribute to research.
If you are a consumer that
takes part in or partners in research, or you involve and support the CCReW in
your own research-related activities, and you would like to share your own insights
and experiences with our community, please contact us. And remember, the deadline for applying for
support to attend the 2022 ACTA ASM is 17 October, 6pm AEDT. Learn more here.