How do researchers effectively involve consumers and the community in their research?
'Start with a conversation. You can't get it wrong when the conversation is talking to people to understand their needs and bringing them on a journey'– said Professor James St John, Head of the Clem Jones Centre for Neurobiology and Stem Cell Research within the Institute for Biomedicine and Glycomics at Griffith University.
Inspired by Australia’s Chief Scientist, Professor St John has developed a consumer involvement program to advance spinal cord injury cell transplantation therapy which led to the launch of a world first phase I clinical trial. Watch and listen as Professor St John sets the new standard for integrating consumers in health and medical research.
For further information on the Consumer Statement review roundtables:
For further information on the review of the Statement:
- visit Review of the Statement on Consumer and Community Involvement in Health and Medical Research
- email priorities@nhmrc.gov.au.
Transcript disclaimer: Viewers are advised that the recording did not capture the first 10 minutes which included the Chair’s welcome, Acknowledgement of Country and topic and speaker introductions. The transcript below includes the first 10 minutes in text format.
Apologies to attendees who were unable to attend due to the number capacity on Zoom. Please be advised this issue has been rectified for future Speaking of Science events.
Recorded on Tuesday 17 June 2025 from 11:00 – 12:00 AEST.
- Video transcript
Ms Ainslie Cahill AM:
Welcome to a special instalment of NHMRC’s Speaking of Science series, where NHMRC has been hosting some of Australia’s most respected health and medical research professionals to discuss breakthroughs, insights, and innovations across the research spectrum.I would like to begin by acknowledging the Traditional Custodians of the land on which I am on today, the Gadigal people of the Eora Nation and I pay my respect to Elders past, present and emerging.
I also extend this acknowledgment to all Traditional Owners of the lands where you are all working today and the First Nations people present in this webinar.
My name is Ainslie Cahill, and I am the Chair of the NHMRC-MRFF Consumer Advisory Committee.
I am also the Consumer Lead with Monash Partners, an NHMRC accredited partnership of 12 leading health service, teaching, and research organisations in Melbourne.
Before we formally get started, I will begin with some housekeeping.
There will be an opportunity to ask questions towards the end, so please utilise the Zoom chat function to initiate those discussions.
If you are ever unable to attend a webinar, or would like to go back and rewatch, all recordings are made available afterwards on NHMRC’s website.
Lastly, a gentle reminder to keep your microphone off throughout the presentation.
I am excited to be your Chair for today’s webinar this morning as it is a topic that I am incredibly passionate about- consumer and community involvement in health and medical research.
NHMRC, alongside the Consumers Health Forum of Australia (CHF) recognises that involving consumers and communities brings significant benefits to health and medical research.
This involvement improves public trust in research and facilitates the translation of research findings into practice, strengthens the research process, makes it more responsive to the needs of the community, and leads to more relevant health outcomes.
NHMRC and CHF are committed to providing leadership and guidance to the health and medical research sector on the effective involvement of consumers throughout all stages of health and medical research.
NHMRC has been undertaking a review of the Statement on Consumer and Community Involvement in Health and Medical Research which was originally developed in 2006 and last updated in 2016.
This review will ensure the Statement remains a trusted resource providing national leadership and overarching guidance to support consumer and community involvement in health and medical research.
I will speak more on the upcoming public consultation towards the end of the webinar, but I believe now is a good opportunity to introduce our guest speaker today, Professor James St John.
James is Head of the Clem Jones Centre for Neurobiology and Stem Cell Research within the Institute for Biomedicine and Glycomics at Griffith University.
He is a translational neuroscientist specialising in the creation and delivery of therapies to repair injuries and diseases of the nervous system, particularly spinal cord injury.
For his work, James was recently awarded the 2025 NHMRC Consumer Involvement Award at this year’s NHMRC Research Excellence Awards and is also the recipient of an NHMRC Marshall and Warren Innovation Award in 2019.
Since the commencement of the Centre, James has been lead investigator on research projects funded by philanthropy, state and federal government including NHMRC and MRFF funding totalling over $35 million.
Inspired by Australia’s Chief Scientist, James developed a consumer involvement program to advance spinal cord injury cell transplantation therapy which led to the launch of a world first phase I clinical trial.
In 2017, he established the National Spinal Cord Injury Project Consumer Panel, consisting of consumers who provide invaluable insights and help design the research.
He has driven the development and codesign of an innovative cellular nerve bridge transplantation therapy to repair spinal cord injury which this year, will progress towards a clinical trial.
His leadership and innovations have fostered such strong consumer engagement in his research that over 500 people have expressed interest in participating in the trial.
James’ work has set a new standard for integrating consumers in medical research and I cannot wait for you all to share in his story. Welcome, James.
<Video recording begins>
0:00 Professor James St John
Nerve bridge transplantation therapy and this has been co-designed by the community and an incredible adventure for us in that consumer involvement. I started off my career doing discovery research, being in a lab but certainly I have to admit that the most exciting part of my job now is being involved with consumers to hear their stories and their help and codesign our therapy. It's really rewarding and really exciting.0:37
I'll just give you a quick overview of our therapy, so you understand the background, but then I'll go mainly into the consumer involvement aspect of it.The cells that we use are called olfactory ensheathing cells. These are the supporting glial cells of the olfactory nerve. The olfactory system is the sense of smell, and the sense of smell regenerates every day as part of its normal function because when we breathe in, we're breathing in air that's full of odorants that we smell. Plus it's also full of bacteria and viruses and toxic chemicals, and the nerve cells that detect the odours are directly exposed to the environment and are therefore subject to death every day.
About 1 to 3% of the olfactory neurons die every day, but are replaced by stem cells that line the nasal cavity, and they project their axons back up into the brain where they make new connections every day. It's the olfactory ensheathing cells that assist in that process and because of these special properties, scientists before my time suggested that they would be useful for repairing other parts of the nervous system, such as the spinal cord.
1:43
This is the sort of history of olfactory ensheathing cells. They were first reported in the scientific literature in the 1980s. In the 1990s that were tested for repairing spinal cord injury in rodents and then in 2002, Professor Alan Mackay-Sim here at Griffith University led the world's first blind study showing or testing whether transplantation of olfactory ensheathing cells into the spinal cord was safe.That study showed that was the case and because of his work, Alan was awarded the 2017 Australian of the Year Prize. Teams around the world have continued to work on the therapy, with the UK team showing olfactory ensheathing cell transplantation can work in a dog model, and in 2013 a Polish and UK team showed that it can work in a human.
We came in 2016, looked at the previous approaches to the therapy, identified the limitations and then thought about, well, what does a future therapy have that we don't yet have and how do we achieve those things? And the main limitation from our point of view was that there were poor cell purification methods, the transplantation method was difficult, and most cells didn't survive the transplantation.
We set about improving that by getting high quality cell purity and then making what we call olfactory nerve britches that facilitate the transplantation. In this way, the cells have stable connections before they're transplanted into the patient, which gives better survival and better integration and better functional outcomes.
We've had now over $40 million of research funding and the clinical trial that we are about to enrol the first person in is costing us over $14 million. It's a lot of money. It's a very complex project, but to get to this point has been because of our consumer involvement.
3:54
This is just an example of our nerve bridges that we've created. The one on the left here is a three-centimetre-long nerve bridge that's made of 10 million olfactory ensheathing cells. Thanks to 3D printing, we can make them also suitable for peripheral nerve repairs such as on the right here. But I won't be talking about these, I'll be talking more about the consumer involvement because the question is we can make a great product, but does the consumer want it? Do the clinicians want it? How do we ensure that our therapy meets the needs of the consumers?4:25
In October 2020, we had raised the funding thanks to the Medical Research Future Fund commitment for the stem cell mission to support the trial. And that was based upon having already raised considerable funding through philanthropy before the trial. Since October, we've been finalising the protocol and hopefully in the next two weeks, fingers crossed, I keep saying that, but hopefully we'll have the expression of interest open to enrol the patients, the first patients in the trial.5:00
But I'm going to touch now on how we got to this point. How do we design such a complex trial with consumers and raise the funding and it's been a wonderful process.5:11
We started off with a consumer panel, so we advertised for people to join our panel. Back in 2017, we had over 100 people apply, and we selected seven people from around Australia. Different times after injury, different experiences, males and females try to get some diversity into it. We limited it to only about seven, I think we had eight to start with, but now we have seven.We can't have a panel too big or too small, but this panel here seems to be pretty good in size. Listening to their stories and their experiences has been fantastic. I remember once we asked a very simple question. It was, I can't even remember what it was, but it was something about what they expect from a therapy and I thought the question would be answered, and we move on to the next question. We had a whole list of other questions to ask, but one hour later they were still arguing amongst themselves about what this question meant to them.
And that really highlighted to me how different people have different opinions, and we have to make sure that our therapy and our communications and our design allows for differences in people's experiences and their desires.
But it really highlighted to us of the diversity that we need to be considering when we design trials. We meet with this this panel once a month and they have intimate knowledge of our research. They've signed confidentiality agreements and they're co-designers on our trial and co-investigators on our MRFF grant, so they're really intimately involved in in this trial.
They have addressed a lot of problems that we've had about the timing of events in the trial, thinking about their experiences, how long it takes them to get ready for going out and so we have to make sure our timings can match what they expect to have.
7:13
We've also done a lot of lab tours and this has been brilliant, not just for the community to come and see us, but for our research team to talk to people with spinal cord injury. At the moment, now we have almost two to three lab tours a month. It's a lot of work initially to get this going, but now it's easy for us to do it.I’m notorious, in my team, we have a large team of over 40 people, that will have a new person join our team and that week or the next week and that we have a lab tour. They'll be up there talking to members of the public about why they're in our team, what they hope to achieve, and what their research is about. It teaches our new students and staff how to communicate, it makes their work seem important, it is important, but they understand why it's important and they learn how to communicate to the community.
But the community gets to ask us questions and we've had incredible questions. Every time we have a tour, we get a new question we haven't thought of or a new aspect of it, which we then allow us to modify our designs or our communication so that we can make sure that we are addressing people's queries and allows us to have a long list of Q&As that we can then put on our website. It improves our communication.
Over the last six years, we've had over 1000 people come through the lab tour. Lab tours tomorrow, for example, we've got a school group coming through with 30 high school students. The open day next week where we have 70 people coming along for more extended tours and politicians, local, federal, state politicians coming through.
Every person's got a different viewpoint, which has been really important for our team to think about when we design the trial. Health economics is part of it. How do we convince the politicians that this is important? And so understanding the needs of the carers and the family as well helps us create that sort of story around it, which we can communicate.
It's also very good for our donors coming through. We have people who come through, mums and dads who might donate $100 or some very wealthy people who donate enormous amounts of money. They can see their research firsthand and talk to the researchers and it's about making connection. Some people might prefer to talk to some of our team that come from different countries, or they might want to support a young female researcher, or they might want to support a medical doctor. They'll find a connection with some of our team and that's really important to do with philanthropies to find those connections and common ground and to bring them on that journey, so we have people come back every year for an update lab tour as well.
I strongly recommend. It's really enriching experience for our research team.
10:25
We also do an online survey of people, and this has been interesting too, because we've looked at in particular differences between males and females. We want to make sure our therapy is suitable for people of all genders, but also to make sure that the advertising is appropriate so we can recruit people to the trial.It seems obvious, but if you are doing cell therapies, people would prefer to have autologous cell therapies versus having a donor cell. This graph here just shows that there's similarities between males and females, but there's a significant difference between males and females with males and more likely and more willing to have donor cells than females.
11:13
Here is the type of implantation for our first trial. We're going to be using open surgery where we expose the spiral cord. There's going to be a risk involved in that. We're moving into the future to have keyhole or image guided injections, which is less risk and a shorter operation. But here again, when we look at the male versus female differences, we see that there's a significantly different approach to it and males, again, maybe more risk takers, are more likely to put the hand up to have the open surgery than females.11:45
Also when we look at outcomes, when do you want to see an outcome from the trial. Males will say take as long as it takes, they'll wait, and I'll put in the hard work if they need to. Whereas females would like to see it within six months. It might reflect women are more impatient and they've got things to do other than doing rehab or yeah, forever.There's lots of interpretations that come with it. But the point is that there are differences, and we need to be thinking about that when we are advertising the trial and recruiting for the trial, and we need to support people in different ways through the trial. We are looking at other aspects too. People who are early after injury have different requirements compared to those who have a longer-term injury.
12:35
But a highlight here to on our panel, our consumer panel, we have two women on the on the panel because of this spinal cord injury in Australia about 20 to 30% are female. So that's a proportion in our panel.But we need to be thinking about, well, what is it that makes it different for women to put their hand up? And when we asked our women on the panel well, one said I've got young kids at home, so I'm not going to volunteer for to be on the trial because I have to think about how to look after our kids. So perhaps not on this trial, but in future trials we could also look at maybe providing childcare or support services so that we can facilitate those with children to get onto the trial.
13:23
We also ask people, yeah, well, what do they want to get out of the trial? What's the most important function they want to get back?It's very easy for us to talk to the media and the media have a story saying, oh, we're going to get people walking again within six months. That's certainly not our message.
We have to be careful how we convey that to the participants on the trial, the broader community and to the media. But the number one function people want to get back after spinal cord injuries, is control of bowel and bladder because not being able to go to the toilet when you want is very difficult. It takes a long time, you plan for it and when you go out to a party or go out to work, not being able to control it when you want is difficult.
If we can improve that and give people back the quality of life, then they're more likely to get out into society. But it also tells us that this is the messages we want to give to the media, in particular that we're looking for incremental small changes. Now ultimately, we want to get people to walk again, full function back. That might be a long journey util we get there. But in the meantime, we have important aspects that are critical for people living a spinal cord injury and so it helps us formulate our messaging and also what we're going to be testing for.
In the trial, we need to be testing for bowel and bladder function and finger control, minor things that can improve quality of life dramatically in addition to those more gross changes.
14:54
Again, if we only get a 10% improvement, how that change people's outcomes and quality of life. The responses from the community have been, well, yeah, less complications, get bowel, bladder or sexual function or get independence back being able to feel is important.Again, this is things that we can then put into our trial to measure and to assess, but also to communicate, to manage expectations of outcomes as well. I'll highlight, yeah we're hoping for big, but we're measuring for small changes as well.
15:33
Here’s just a summary of the trial. From our point of view, the hard bit is the cell transplantation aspect. It's a intranasal biopsy. It's sort of like a COVID test. You've got to put it right up in the top to get the biopsy out. It's a short procedure.From that we get the sample where we have to purify the cells and then create 100 million cells that we need for the transplantation. We then use our special invented technology to make these nerve bridges to then transplant it back into the patient. We're using the patient's own cells and then that's open surgery. And that's the easy bit from a patient point of view, because around that is the rehabilitation.
Once these cells start the repair process, we need the body to make sense of those connections, to get those neurons to project excellence to the right targets, to ruin the ones that don't get to the right targets and to reinforce those connections to get the threshold. That takes long term intensive rehab. It's like a baby learning a walk and talk. It takes years. We need to be thinking on the same time frame as that.
Prior to the surgery we have three months. People get fit and ready and get used to the programme and maybe they'll get some improvements which have been missed before from not doing rehab. Then we'll get people to do eight months of rehab after it as well.
We do think it is a longer process than that, but we have to draw a limit at some point in the trial. Throughout this process we'll be doing lots of medical imaging. We're going to be recruiting 20 people for the cell transplantation and rehab group but also because intensive long-term rehab isn't as routinely available in Australia, we need a control group.17:29
The control group will do the same programme, but none of that cell transplantation.We asked our community, what do you think about being recruited to this trial and being on the control panel? A control group rather than in the cell transplantation group and we had diverse opinions. Some people said, no, they don't want to be, which is perfectly understandable.
Others said, well, we understand how clinical trials run and we understand that we need to have a control group say for the greater good, I'm very happy to be part of it. Other people said I'll get I'll get free rehab for a year so yes, I'll get a benefit anyway.
Again, we show that there's good demand for being part of the control group because it's really important. Recruitment is a critical aspect to it.
The whole trial safety and feasibility number one but we're looking for indications of efficacy as well and we're looking for diversity. Other clinical trials of spinal cord injury have been too small. The interpretations of the outcomes have been difficult because of the limited number of people. We're looking for diversity, diversity of injuries, diversity of time after injury, diversity of severity so that we can interpret them and find the responders versus the non-responders. That helps us inform the future planning.
18:56
Diversity and responders versus non responders is the is the critical component of this, but also it's the differences between females and males. Our target is 40% recruitment for females and the reason we've gone for that, even though women constitute 20% of the spinal cord injury population in Australia, is that if we don't have enough women on the trial, we may miss those responders. We need to boost the number of women on the trial so that we can find responders versus non responders.Too much in history of medical research has the differences in biology between males and females being ignored. We have made this a priority for our research to make sure that we are targeting this aspect of it.
19:44
That makes it more difficult because then how do we recruit women to the trial when our spiral cord injury survey of the community said that women are less likely to put their hand up for the trial because there's more risk in it or they got other activities that will keep them from participating.We've consulted with the community, and we looked at other trials and it was clear that we had to make sure our advertising is targeted toward women and so with our community, we design our advertiser.
20:19
You can see here the icons in here, the person with spinal cord injury, it's a female perspective to it because we want women to think, OK this applies to them. We know that men are going to put their hand up to it, but we want the women to put their hand up as well. This advertising was co-designed with the community to get their feedback.
Another aspect we did was about making videos to communicate it to the broader audience as well. I'll show you a video here. This one was created in conjunction with our film school at the university. You can go out and look at animations and get animations made commercially. They're extremely expensive or maybe 3D AI is going to help in the future. But when we made this one a animation costs upwards of 15,000 to $60,000.We went out to our film school and with our consumer panel and we got them to co-design this one. The characters you're going to see in the 2D characters have been co-designed with our consumer panel. We had two people in our consumer panel work with the film school. The text has been co-written with them and what you're seeing here is truly a co-designed programme.
21:36
Hopefully the voice is going to be. Are you getting sound? Are you? No.22:24 Ms Ainslie Cahill AM
No, I don't have any sound James.22:26 Professor James St John
Let me see what I can do. Sorry.22:34 Audience member
Yes. Thank you, James and Ainslie.22:36 Ms Ainslie Cahill AM
Thanks.22:37 Professor James St John
I'll go back. Well, maybe it wasn't sound of the video though.Do we need to keep I think you got the just the video anyway, so I'll continue on.
The video goes through; the characters were co-designed to make sure that the braces and the positions of the feet were there.
23:00
This guy Brad here. I've caught you in here. The consumer panel.He was part of the team that co-designed it with the film school and when you saw the final product, he got quite emotional because you said that it's the first time he's worked with someone who understands what he goes through.
To see the vision there was empowering for him because he said he's been heard, and I thought that was fantastic feedback from him as well.
23:33
As I said before, we need more than just the cells, so we need rehab and so I'll touch on the rehab. The rehab is intensive. We want people to do it all the time.We know that some people, elite sports people, they train 6 hours a day and they have spinal cord injury. These people out there are used to intense rehab. Other people like the majority of us don't do much, but everyone's supposed to be doing at least 30 minutes of exercise a day. Unfortunately, people with spinal cord injury have limited access to it, so we need rehab.
We thought about and I saw one of the questions coming up about diversity of locations in the rural areas. Our first trial was looking at this intensive programme and was it can people do such an intensive programme? How do we modify to meet their needs?
The first trial was looking at doing an intensive programme of rehab over four months plus then two months back at home, thinking that people might go back to wherever they might live in country Australia and do it with their local facilities. The outcomes from that were that people wanted to do it on site in a supportive environment, didn't like doing an at home programme.
The second trial we'd completed was looking at people with very little experience of rehab and that was also eye opening. We thought there'd be more drop out. As we know people can join a programme and then they drop out like many of us have done with a gym programme before.
But these people had very little experience during rehab. They loved the programme, it was very supportive and at the end of it they said, well, what's next? We want to keep on going with it. We know that the rehab is good and suits people.
One of our partners for the rehab is Making Strides, which is here on the Gold Coast. It's a community-based rehab facility very much hands on. We’re also working with Royal Rehab in Sydney, who's got the much more the high-end equipment and also in Melbourne, the Next Step, which has again community based holistic approach to it.
There are different types of rehabs to suit different types of people. Yeah, this is here. Making Strides is a high energy gym, and I think it's fantastic. My wife's been to the same place, and she prefers the Next Step in Melbourne because it's more holistic and it suits her personality better. It's again, it's finding out rehab facilities that suit different people.
26:07
But also it's about, what does rehab do? This guy here, Nick is part of our consumer panel and for him, the rehab was eye opening in a sense of wow, you can provide confidence, you get out into community and because of that, you're more likely to continue to do it. There are benefits beyond just the physical rehabilitations. What's the social aspects of it as well?We have to remember, we're dealing with people and the diversity of people. But at the end of the day, most people like to be with other people and if you have spinal cord injury, often you're stuck at home. If we can get people out, that can be life changing for them. We have to make sure that we can provide these sorts of services in a supportive way.
The feedback was we need to provide transport, we need to provide combination for people, and we need to be flexible in allowing them to have time off when they need to as well. Because people with spinal cord injury have all sorts of complications that just arise every now and then so we have to have that sort of flexibility in our in our protocol.
27:18
I'm getting close to my end here.But just to finish up, the other thing we've done is to work with the clinicians very carefully to help them understand the surgery because particularly the chronic spinal cord injury, clinicians don't go back into the injury site. There's no need to, they don't really know what an injury site looks like.
27:41
With Dr Ronak Reshamwala, who's a research fellow on our team and also medically trained, he has, we think is the world first image of people's injured spinal cord and here's the 3D replica of it.With our Advanced Design and Prototyping Institute here at Griffith University, we've converted MRI images into the 3D printed models of a person's spinal cord injury.
28:07
What we can do here in this middle one, we can see this is an actual replica of a spinal cord injury with a cavity. This on the right here is the cavity that's been printed, so that's the shape of the cavity. And so, the surgeons can now use this to plan how they can put the nerve bridges in, so it de-risks the surgery.They can train beforehand before they open up a patient, they can look at these, they can practice on these ones and get their approach to the surgery as well. De risks it and helps plan that surgery, plans how many nerve bridges we can put in.
28:47
When we showed these 3D nerve bridges to our consumer panel, Ashley in the middle was like, oh my gosh, I now understand what an injury site looks like. I'd love to have one of my own injury sites so I can understand what it is and if she's on the trial, we can print one at the start and at the end and see the changes that had happened.That can help inform the patient and a condition about what might be happening within the spinal cord. It’s not just de risking, it's a training tool for the surgeons, but also it's an educational tool for the participants in the trial. That feedback from consumers was very important and they've worked with us. The print that we got was for one of our community members who gave us access to their MRI scan so we could print those 3D scans.
29:35
Another big part of our work is of course philanthropy and communicating to the broader audience and through our partner, the Perry Cross Spinal Research Foundation, which is a long-term partner. We have lots of events around Australia. This is one of their events, which is the gala dinner here on the Gold Coast and if you happen to be passing by in March, I recommend you come along.It's a big fun event and we've got a great supporter base there, but we have a lot of donations coming from the community because they see the importance of this trial that we can produce here in Australia.
30:13
Just to sum up, philanthropy has been critical. We've raised over $12 million for the preclinical research and for the clinical trial and that's helped us to leverage for the government grants as well from MRFF and NHMRC plus also state government.It really is a combination of the community with state government and with the federal government. It's exciting to be part of this project and to have it here in Australia. Hopefully we can get good outcomes for everyone.
30:46
We have many partners. As you can imagine, this is a big project, and the community has been incredible support for this one. We acknowledge those partners.30:57
This is our team that we have here at the Clem Jones Centre. Diversity of our team is a critical aspect of our success too. We have over 40 people coming from 21 different countries and every person we recruit adds a different skill to our existing skill set.Maybe I'm a smart person, but I haven't got the therapy working in a clinic yet, so we need some more bright minds to come along and make it even better. We really value the crazy idea that might just work and so that's what we're looking for.
Also, we thank the community for volunteering. As Ainsley said before, we have a huge database of people wanting to be part of a trial and we get contacted all the time from around the world about who can be on the trial.
We know this demand and we're working as fast and as carefully as we can to make this therapy a success if that's where it's going to go.
If you want more information about the trial, you can email us at scitrial@griffith.edu.au or you can scan that QR code and you get a link to our website.
We're not live yet for taking expressions of interest, but that's our hopefully we open up soon. I mean, it's our journey. It's been an incredible journey and happy to take some questions now so I can pass it back over to Ainsley.
32:25 Ms Ainslie Cahill AM
Thank you, James.We've got almost 15 minutes available for questions.
There are some in the chat and I'm going to bunch a couple of them together that might be more orderly.
There were people interested in knowing how did you initially advertise for the panel? Were there any particular ways that were better than others? And also, how did you manage then with only eight people and about 100 expressions of interest? How did you cull that? What was the criteria you used for that?
33:04 Professor James St John
Yes, great questions.We advertised this through our networks, through the Perry Cross Spinal Research Foundation, Spinal Life Australia and social media.
We had no idea how many people would get. We were inundated by applications. I think it was like 120 within just the first week. Somebody then closed the chat because we didn't want to spend our time sorting through, but we wanted to have a mix of males and females. We wanted to have different states, different times after injury. When we divided them up into the different states and then males and females and then we had overlaps obviously people with certain ages after injury, but then that pretty much was shortened down into a manageable size.
From there it was about their interest that we had asked them to put in a particular explanation why they want to be part of it. That was how we got to our final selection.
How do we manage the people who didn't get on? That was interesting too, because a lot of people contacted us afterwards and said I really want to be part of the panel.
We had to apologise to them and say that we're certainly keen on hearing their opinions through other channels, particularly through tools and other things like that.
But some people were really keen to be part of it and were disappointed that they weren't part of that panel in an initial selection.
34:35 Ms Ainslie Cahill AM
Would you say that the networks that you had were the strong aspect of recruitment and did you use social media?There was another comment in the chat, a person who had used social media with little success.
34:53 Professor James St John
Yes.One of the good things about spinal cord injury is it's got very strong network within themselves and so they then shared it with each other.
We're lucky in that sense that they do a lot of the work of sharing it around Australia and around the world too to get that interest. It can be difficult.
We've had another consumer panel for peripheral nerve injury. They don't have a strong network and so that has been more difficult for us to recruit for. So yes, we're lucky in our sense of having a strong, the community has a strong network that we could tap into.
35:33 Ms Ainslie Cahill AM
As always, remuneration raises its head and there has been a number of questions about that.What your policy is about remuneration? Is it an hourly rate? Is it a retainer? And I'll thank Kathy from Monash Partners for putting a link in the chat to Monash Partners’ policy about suggested payment. There are a lot of recommendations, guidelines, for example, in WA, Watton's website, Health Consumers NSW, et cetera, et cetera.
But from your particular project, how did you manage or how do you manage that?
36:16 Professor James St John
Initially when we first started, we didn't pay the consumers for the consumer panel, but then we realised that we certainly needed to.In line there was also guidelines for from NHMRC I believe, we paid, we’d told that consumers we were going to pay them. They didn't want to be paid. They said no, no, no, we don't need to be paid, but we insisted upon it.
We pay them for each meeting that we have once a month plus also if they do reviews of our grants, we pay them on an hourly basis there.
When they're involved in the design of the animation, they were paid for their time to be part of that as well.
We also looked at remuneration for being in the clinical trial and we have we remunerate people in the clinical trial for every hour they are in the trial. That means every hour they're doing rehab as well. We certainly value their contribution.
We take the viewpoint of if we're getting paid as researchers to be part of this consumer panel, then the members of the consumer panel should also be remunerated.
It's not a lot of money at the end of the day, but we get very valuable insights into what we should be doing with our research because of it. It's a critical point.
37:39 Ms Ainslie Cahill AM
Do you have anyone with lived experience on your research panel group?37:46 Professor James St John
No, no, actually in our research team we don't have people with lived experience.We do have some people who've got family members. Unfortunately, there's a lot more people out there with links to people spinal cord injury than you'd think. That's another reason why we recruit people with, they have a family reason for it. But yeah, also always welcome for people to join us.
38:14 Ms Ainslie Cahill AM
This is, you mentioned that the Australian Chief Scientist had sparked your interest in a challenge, I suspect, in consumer and community involvement. But someone's asked, I'm curious to know more about how you became aware of consumer involvement in research and the benefits and what led to the establishment and inclusion?I suppose a little bit of a brief expansion on the initial challenge.
38:45 Professor James St John
I was, in 2015, I was a contract researcher, had been all my career since 1996, short term contractors as many of us are in this field and my money was running out.My wife had been offered a job in Sweden and we're going to go off to Sweden. The Clem Jones Foundation, I put in my vision of creating a cell transplantation trial to them, and while my wife and I were thinking about whether we stay in Australia or go to Sweden, the Clem Jones Foundation says we'll support you, here's some funding, but you have to leverage it and you have to leverage it through the community and you need to make this trial a reality.
Then at the same time, I went to this shortly after Alan Finkel was presenting at a conference here on the Gold Coast and he said that innovation is not creating the idea, but innovation is delivering it to the community and working backwards from there.
If you, you need to have a path to market and if you don't have a path to market, you either change what you're doing, or you make a path to market. That means you have to understand what the market wants, what the community wants.
For me, it's like, well, everyone's telling me we can create this therapy, we can do it here in Australia. We need to leverage it. We need to know what the market is. I have to go out there and find out what community wants and that's what started us. It was needed to be successful
40:20
Well, that feeds into a next question, which is can you quantify the effect and impact of your consumer panel?Do you think they helped in getting the necessary funds?
40:33 Professor James St John
Absolutely, 100%. Without them, we would not be here without our lab tours.I mean, it all comes together, but our lab tours, the consumer panel, they had been critical for us to tell the story and that's it. When grant writing is telling a story and to tell a story in a way that other people understand it and to make sure that we are touching on all the important aspects of it.
If you don't know what the consumer wants, you're going to be missing something and that might be the difference between success and not getting the grant.
41:06 Ms Ainslie Cahill AM
Excellent.Are there any other words of advice for the next generation of health and medical researchers wanting to involve consumers and community in their work?
Was there something you wished you'd known before you began this or what would you hone in as just important for those who are yet to delve into these exciting partnerships?
41:32 Professor James St John
It's easier than you think.Yeah, you can you think, well, where do I start? Or just start with the conversation?
Some people said, it's too much risk. What if I get it wrong?
You can't get it wrong when the conversation is talking to people to understand their needs and then getting that sort of communication going and bringing them on a journey. It becomes fun getting out of the lab, talking to people might seem like if you're doing lab work you've got to be in there doing all yourself western blots or culturing, but you'll probably get more value by going out and talking to people as well. We do a lot of it and it’s successful.
42:14 Ms Ainslie Cahill AM
What do you think has been the biggest professional sliding door moment? You know, the ha ha ha moment in your career?42:24 Professor James St John
Certainly I would well, from the research point of view, is bringing in young people who've got no idea what they're doing.They're doing something crazy with an idea, and it works so not to put the blinkers on as to be. Yeah, to relax as well as scientists, we have to be creative. We have to relax. Allow people to be creative. Give them the freedom to try something really stupid.
42:55 Ms Ainslie Cahill AM
That's excellent. Well, look, we are running out of time.Thank you so much, James.
I did want to mention to everybody that we are capturing all of the questions. We didn't have time to go through them all.
The other point is that we discovered during the course of the webinar that the technical capacity was limited and the zoom was the entry was capped at 300. We apologise to those who missed out.
I'm hoping if you're looking at us now, it's because you've gone to the website on another day to check it out.
We are very sorry for that but nevertheless, you can still capture everything on the recording.
I'd like everybody before we talk about the Consumer Statement, just to thank James for his outstanding work and a very interesting presentation.
43:57
So we'll go. So that's good.44:02
Now we're just coming towards the end, but as mentioned.44:13 Professor James St John
You're on mute, Ainsley.44:18 Ms Ainslie Cahill AM
How's that? Sorry about that. I don't know what happened.Alright, so we're now going to get on to the revision of the Consumer Statement.
It will be undergoing public consultation very soon and has been developed through initial consultation with consumers, community members, researchers, research institutions and research funders.We highly encourage all of you to have your say and to get involved in the review.
There will be national roundtables conducted by the Kids Research Australia Institute Australia and I can see Belinda and Mitch on the webinar.
They will be leading that and I'm sure it's supported by Anne McKenzie.
We have a slide up here, the online survey will be available shortly, but you are able to register your interest in attending one of the round tables just scan the QR code shown on the slide or visit the Kids Research Institute Australia's website.
We want to get as many people as possible sharing their information or their views. For further information on upcoming consultation activities, these can be found on the NHMRC’s website. You can also subscribe to the newsletter to stay in the loop.
45:50
That wraps up the Speaking of Science webinar for June. Again, it's been terrific to have such incredible interest in this.Again, James, just thank you for speaking on the incredible consumer driven research conducted by the Clem Jones Centre for Neurobiology and Stem Cell Research.
Thank you everyone else for joining us today and your questions. As I mentioned, we won't forget them if they haven't been answered and thank you and enjoy your afternoon.
End of transcript.
