CONSUMER REPRESENTATIVE SPOTLIGHT– DUNCAN READ (NSW)
When Duncan was diagnosed with type 1 diabetes (T1D) as a young teenager, he took a keen interest in exploring the impact his condition had on exercise. He had to learn how to manage his physical and mental health whilst pursuing his goals.
Forty years on he feels #fitterforhavingit and not only is he an ultramarathon runner, he is passionate about sharing his lived experience, both on and off the marathon track, with others and helping them to achieve their dreams whilst living with T1D.
Now as a Consumer Representative on the Centre’s national Community and Consumer Involvement Committee, Duncan spoke to us about what led him to wanting to be a part of our JDRF Global Centre of Excellence and what he hopes for the future.
What led you to become a Consumer Representative and why?
I have lived with type 1 for a long time, since I was 14. I can still remember what it was like as a child. The longer I have it, the easier it is to manage and the less anxious I am about trying new things. Over that time (nearly 40 years now), I have witnessed amazing advances in research, technology, and diabetes management and education. These changes make living with type 1 easier - smarter insulins, pumps, glucose monitors, CGMs, food labelling, exercise guidelines – there’s a really long list. The reason I became a consumer representative was to add my 40 years of real-life experience – the hunches, ideas and thoughts we all have living with type 1 – to the latest scientific theory and research to accelerate change.
What do you hope will come from being involved?
My first and biggest hope is that consumer involvement helps researchers, doctors and scientists focus their energy and effort on technologies that will make the biggest impact to the most people. I’d really like to stand back after a long time living with type 1 and be able to say that integrating my voice and experience - my stories about tough times and good parts – helped progress new ideas, products or treatments that benefit thousands of people just starting their type 1 journeys.
My second hope is to build connections and share stories that motivate researchers, scientists and clinicians. I think the more we share what people with type 1 CAN do and what would really make a difference to our lives the better. I met a young researcher at a conference last year who said I was the first person with type 1 that she had ever met. Putting a face and story like mine behind a data-set can be quite powerful and inspiring.
What have you been involve in so far?
I’ve been involved for about a year, and attend community and consumer involvement committee meetings which are every two months – I’ve been asked to chair the next one. I’ve also joined the scientific program sub-committee. This means listening to presentations from researchers on their work and exploring new technologies, treatments and research with them. I’ve used my role to share practical feedback. I also attended a face to face Symposium last year which went for two days in a room with one hundred health professionals, researchers and consumers. This was an incredible opportunity to talk about our interests, experiences, and comment on how their work makes a difference. I have three particular interest areas (1) mental health and resilience – how a positive mindset can be used to improve outcomes; (2) social determinants – how factors like an individual’s support networks, family, friends, job, education, and post code impact on health; and (3) sport and exercise – how this is at the centre of mental and physical well-being. I’ve been connected to people and projects in all of these areas.
The Centre is very lucky to have Duncan as a Consumer Representative. His passion and dedication to helping our researchers find new and better ways of managing type 1 diabetes is definitely making a difference to our studies.
If you or someone you know would like to become a Consumer Representative and help make a difference, reach out to our Community Involvement Coordinator at community@childrensdiabetesresearch.org.au to find out more.