Just ask us

This week the Australian Diabetes Educators Association/Australian Diabetes Society conference is on in Perth. This is the annual scientific meeting for diabetes health professionals and researchers in Australia and will attract around 1,500 people. It’s a buzzing, busy, exciting few days where diabetes is the focus.

I am heading over there on Thursday to present at a symposium about language. The symposium is titled Talking the Talk and is looking at how to engage people with diabetes – specifically the language that is used and I have been asked to provide the consumer* perspective.

I always find it interesting attending these conferences. The opportunity to hear new research is always great. The latest technologies are on display in a huge, cavernous hall – lots of lights and noise with all the company representatives trying to get the attention of the delegates. So all in all, it’s a one-stop-shop of the latest and greatest in diabetes.

And yet, I always feel disappointed at the limited focus on the actual person with diabetes. Yes, of course all the information is about us – I get that. And yes, the overall aim is to offer better treatment and management options, and reveal new research and findings that will, hopefully, improve living with diabetes. But the input from people living everyday with this condition- the people who can report on how these treatments actually impact is minimal. Consumer involvement – there ain’t much of it.

I understand that health professionals may consider this annual conference to be ‘their space’ – an opportunity for them to get together and share and learn; to workshop and network and do all the things that are intrinsically important when developing a workforce. And perhaps this isn’t the right forum for a group of consumers. But I wonder if research that delves into the thoughts and perspectives of people with diabetes could have more of a high profile?

It’s one of the reasons that I love working with the staff at the Australian Centre for Behavioural Research in Diabetes Built into their plans is consultation – and consultation with the right people. It’s a pleasure and an honour to be asked for feedback and comment, and as the manager of a consumer-driven program, it makes me want to promote their activities to the type 1 community as much as possible.

Recently, I was asked to sit on an expert working committee which is developing a resource for children with diabetes and their parents. I was there as the consumer representative and did my best to make sure that the people who the resource is aimed at were considered. When it became apparent that the resource had not been truly focused tested, using the intended audience, I piped up – as I have a tendency to do, and made it very clear that this needed to be built into the development of the resource.

I was able to mobilise some of our troops – family support groups – to have a look over the resource and provide comment. Yes, I had been brought on board and handed a consumer hat, but I am not the parent of a child with diabetes. I am a thirty-something woman with diabetes. Need feedback on diabetes and pregnancy? Sure, I can do that! Want my thoughts on how to best communicate with your health care team? I’m your girl. Want to know where to find the perfect pair of mid-calf boots? Yep – that’s me. But how parents of children with diabetes deal with certain situations? I can’t really give a consumer perspective on that. The parents I asked to help were terrific – they provided considered feedback that will shape the resource into a much more relevant and useful tool. And I was so impressed with one of the parents who said to me that she was glad that she had been asked – pointing out, most respectfully, that whilst I understand a lot about life with diabetes, the parents’ perspective is not one of my areas of expertise.

Maybe a solution is to look at what is being presented at these conferences and focus more on research that heralds the needs and views of people with diabetes. Perhaps by sharing the results of what people with diabetes are asking for with the people who are delivering the information to the consumers we will be able to close the gap between what we want and what is delivered.

Renza Scibilia is the Manager of Type 1 Diabetes and Community Programs at DA–Vic. She has lived with type 1 diabetes since 1998. The opinions and thoughts expressed in her occasional blogs are her own.

*Consumer is a word that’s not loved by all. I don’t really love it, come to think of it. By consumer, I mean people with diabetes, their friends, their families.