Dr Ashley Ng

Earlier this month, a commentary paper I had the pleasure of helping to lead was published in The Lancet Diabetes and Endocrinology journal. The paper focused on the importance of working with people in the diabetes community to develop health programs and services with practical strategies on working towards best practice. Nothing about us without us. Read it here.

For many researchers, getting published in a journals like The Lancet or New England Journal of Medicine or Nature is a career highlight in itself. It’s like having your work featured in the National Geographic. Journals have a metric called “impact factor” which is the average number of times other people would cite or reference your work over a two year period. Generally, the higher the number the better. A lot of the journals I’ve published in have an impact factor 2 to 5 if I’m lucky. The Lancet? 44. *yelp*

Having our perspectives shared on such a credible and global platform also helps to amplify and spread the message to researchers and clinicians. We’re talking to them at their level, on their platform. We’re no longer “just consumers” “jumping up and down” about wanting a seat at the table. We are at the table and influencing others on how to do the same. I’m still considered a baby in this space compared to others but it’s heartening to see the shift in culture to involve people who have lived experience across the health sector. It is certainly helpful that increasing grant applications are calling for consumer and community involvement to be embedded into projects to ensure that needs of the community are met. At the same time, this is likely to improve the implementation of the program or service into the real world setting.

I think, for me, another major achievement is having this amazing network of advocates around me that has enabled this publication in the first place. It was at the Australasian Diabetes Congress in Adelaide last year where I introduced two colleagues to each other; both with lived experience and dipping their toes into advocacy. Being the research nerds that we were, it didn’t take long before the idea for the paper came about. Within weeks, we had put together the bare bones of a pitch to the journal, reached out to our networks to assemble a team to ensure a diversity of perspectives and finnessed the pitch.

When I look around at the team, I see years and years of experience, wisdom, knowledge, passion and resilience. We have fought hard continuing to manage this beast of a condition while ensuring that our voices are heard. For many of us, it started with us sharing our story; whether that be to colleagues or organisations, it is important for clinicians and researchers not to forget they’re working with people rather than numbers. We advocate for our community professionally by choosing to apply our skills and passion in the diabetes space and beyond that in voluntary capacities. Now we’re calling for more researchers and clinicians to step up to support diabetes community members so we can continue to work together to make a difference.

Our pitch was accepted just before Christmas and the full paper had to be submitted not long after new year. It was slightly chaotic as we all had other big life things happening at the same time. Nonetheless, everyone found time to share their thoughts. The discussions in itself were so rich and insightful, it was hard to narrow things down.

We know the landscape of consumer and community continues to evolve. It’s not a fad that is going away anytime soon (how often have we heard that?). Many researchers and clinicians recognise the value of hearing stories from people with lived experience. It’s time to help support the “how” and ensuring that we are partnering with the diabetes community in a safe and meaningul manner.