Shane lives in Dublin and has represented Ireland at two World Diabetes Congress (WDC) as part of the International Diabetes Federation's (IDF) Young Leaders in Diabetes Programme. The most recent WDC took place in Vancouver, Canada in December 2015. He was diagnosed with type 1 diabetes at the age of 17, that was 13 years ago. I interviewed him through email as I was very eager to find out more about the World Diabetes Congress and the Young Leaders in Diabetes Programme.

Here's what Shane said;

 

Tell us a little about yourself.

I'm currently working as a Care Research Lead at the UCD Applied Research Centre for Connected Health (ARCH). It's my job to coordinate various projects that leverage digital technology to help improve self care among people with chronic conditions such as diabetes.

Prior to this, I carried out a PhD highlighting the role that adverse social conditions play in the onset and poor management of type 2 diabetes. So I guess you could say I've kind of made a living out of having diabetes :)

Outside of work, I love playing guitar, annoying my house mates with my singing, listening to music and hanging out with friends. I am also an avid cyclist and love keeping fit in the gym, both of which obviously present difficulties for someone without a fully functioning pancreas like myself!

Tell us a little about the Young Leaders in Diabetes Programme (YLD)

The YLD is a programme run by the International Diabetes Federation that seeks to empower young people with diabetes from all over the world to be effective agents of change in their community and in the healthcare system. The programme coincides with World Diabetes Congress which takes place every two years.  I've had the great honour of being representative on the programme twice in a row.

 

What attracted you to the YLD?

My journey as a YLD began five years ago with a chance encounter with the then President Elect of YLD , Alexander Silverstein, at the World Diabetes Congress in Dubai. I went to the conference alone, but it just so happened that I was staying at the same hotel where the YLD training was taking place.

While returning from the Congress one day, I saw a sign for a YLD dinner event... and like any good Irishman decided to gate-crash the party!!!

I was introduced to Alex and got talking about my PhD research. He suggested I should approach Diabetes Ireland about becoming an Irish representative.

Not being particularly extrovert by nature, the idea of me as a 'young leader' in anything sounded pretty preposterous at the time, but I felt passionate enough about my research and about improving the lives of people with diabetes to put myself forward to be a representative at the World Diabetes Congress in Melbourne in 2013.

 

What opportunities has the YLD given you?

To say that becoming a YLD was a life changing experience would not be an overstatement. It gave me the belief that what I was doing as researcher was worthwhile and could make a difference to the world - even if in a very small way.

By providing me with new networks and connections in the diabetes community, it also opened up new doors in my personal career development.

Most of all, however, it's given me the opportunity to develop relationships and friendships with other people with diabetes from all over the world that I hope will last a lifetime.

In short, it's helped me turn diabetes from something that I, initially, saw as a liability or weakness into a source of personal strength and affirmation.

I'll be forever grateful to Diabetes Ireland, the YLD organisers and Executive Council, who carry out heroic work to bring the programme to fruition, for giving me this opportunity!

 

What was your experience of WDC  Vancouver 2015?

Vancouver 2015 is an incredibly exciting place to be for a research nerd like me as you get to hear about the latest advances in diabetes treatment. It also does a better job than most medical conferences of giving patients themselves a voice through inviting the YLD's to speak as well as people from indigenous minorities who suffer disproportionately from diabetes and its consequences.

On the flip side, I think the Congress meetings continue to neglect an important aspect of patient experience and that is the wider social environment that determine the ability of individuals to enjoy a healthy life. For example, there is plenty of evidence to suggest that countries, such as Norway Denmark Finland and Sweden, who actively intervene to improve the social and living conditions of its citizens, have amongst the lowest of levels of obesity and type 2 diabetes (and practically every other preventable condition you can think of) in the world. Yet, diabetes continues to be discussed at conferences like the WDC largely as a problem of poor personal choices made by individuals. Given this startling statistic, should there not be at least some debate about what kind of society we need to create in order maximise the chances of everyone to live to old age without developing potentially debilitating conditions such as diabetes and cardiovascular disease?

 

Here are the IDF's video of the highlights of the WDC Vancouver 2015. To me, Shane is an inspirational leader and I feel that we can expect great things from his research work at ARCH and beyond.