Written by Dr Colleen Lewis – she hold a PhD in public policy and is a member of CERA’s Consumer Advisory Group. She has no central vision in one eye and has wet and dry macular in the other. She has been a participant in a clinical trial.

I write this as a ‘consumer’ of eye research who has a strong desire to learn as much as possible about the research being conducted or planned by the dedicated, talented researchers who strive for years to find a cure for many diseases, including eye diseases that can rob people of their sight.

In recent times, the ability of consumers to interact with researchers and contribute to research in a meaningful way has changed. Consumers are now becoming a key part of the research process, which includes ways of attracting people to participate in clinical trials.  To learn more about the research and to engage with other consumers of medical research, I attended the Australian Clinical Trials Alliance conference in Melbourne in December 2024.

Consumers came from all over Australia and were not only people with eye diseases. We shared stories of our experiences with each other and with conference participants and attendees.

Many aspects of health-related research were covered.  Several world-leading researchers in their field flew to Australia to present their research. Other presenters focused on the challenges faced when recruiting people into clinical trials. To a lesser degree the involvement of consumers and the role they can play in contributing to the knowledge base of researchers was addressed.

I say lesser, as despite consumer involvement now being an essential component of those applying for research funding it appeared to be far down the priority list of several presenters.

At this early stage of the new consumer-researcher relationship some sessions did involve consumers.  Often they were part of a panel rather than presenters in their own right. I believe that this will change and that future conferences will have greater involvement of consumers in the delivery of papers and one day they may even be invited to deliver a key note address at a clinical trials conference.

I did learn a lot from attending the conference but believe I could have left better informed had several of the presenters not crafted their papers to solely inform other researchers. In some papers the language used was unfathomable for many consumers and this limited their ability to ask questions.

Here is an example:  After a presentation from an eminent researcher, a consumer made an all-important comment on the content of the paper. In a respectfully worded but honest appraisal, the consumer explained that he hardly understood any of the presentation as the language used could only be understood by specialist researchers in the field.

To his great credit the presenter readily acknowledged that he had used a plethora of technical terms the meaning of which would only be comprehended by other researchers in his discipline.  He went on to say that he could have delivered the same message using more words/phrases that would be more easily understood by consumers.

As a consumer, I was delighted by his response and see it as a giant step forward in the fledging relationship between consumers and researchers.

One consumer made a very poignant comment when he told researchers and the broader audience that consumers are more than their disease. He went on to point out that consumers can bring a great deal to the research process above and beyond just their medical condition.

From my experience to date, that is something that the Centre for Eye Research Australia understands. It is part of the reason the organisation is involving consumers in their decision-making processes and communication strategies.

As the conference was about clinical trials it also addressed the obvious need to attract more people into them. During these discussions, I found myself thinking, would I put my hand up to be part of a clinical trial if I didn’t understand what the committed researchers were trying to achieve and how they hoped to achieve it?  I kept on asking myself what more needs to happen for potential participants in a clinical trial to place trust in the process if they don’t understand what researchers are proposing? Would a researcher feel confident in being part of a medical-based trial outside their area of expertise if they were unsure of the potential impact of that trial on their health?

These questions led me to look at a few websites that focus on trying to recruit participants into clinical trials. In some instances, I couldn’t understand the jargon and therefore would probably not volunteer.

I understand that consumers can ask any questions they like of researchers before agreeing to be part of a clinical trial. It’s not clear whether all researchers appreciate that some consumers would be a little shy about displaying their lack of knowledge or admitting that they simply don’t understand what is being proposed? Engaging previous and on-going consumers in all future communication strategies will benefit researchers as much as it will consumers of the research. No one understands better the importance of clinical trials than the participants whose lives have been saved or the quality of their lives considerably enhanced by the brilliant researchers who devote their professional lives to finding a cure for debilitating, life altering health issues.

Consumers at the clinical trials conference sent this and other important messages to all who attended. A theme running through all messages was that consumers want to help in any way they can. From talking to many of them I came away thinking that they understand that it is researchers who must determine the nature of the research and that the role of consumers is to assist, in any way possible, to bring about a successful outcome for both researchers and consumers.

A key sentiment I took away from the consumers who attended the conference was that given the opportunity they have a lot to offer in attracting more people into clinical trials.  The key emotion that will drive greater involvement is trust. Who better to speak to the issue of trust than those who have trusted the researchers and the research protocols and hence have taken part in clinical trials?