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Responsibility

Living with diabetes in an online world: a personal account

Kyle Rose |

A type1 diabetic and INSEAD student Kyle Rose (MBA '10D) describes how social media interaction help him manage his chronic ailment.

Kyle writes that although, as a person with Type 1 diabetes, he was excited about the INSEAD Alumni Healthcare Summit's focus on chronic disease management this year, he was surprised that social media didn’t figure much in patient outreach strategies discussed by representatives of multinationals at the forum.

“It made me wonder whether large healthcare firms are so detached from their end-customers that they don't realise the importance of online communities in their customers' lives”, he says. “Whether it's a hospital, clinic, doctor, nurse, reimbursement issue or product comparison, the fact is that some patient has probably posted about it online. For those of us who do not post information, most of us at least read it because we want to learn from others who are going through similar experiences.”

I live with diabetes 24 hours a day and seven days a week. It’s a disease which is exhausting because you always have to think about it. Are my high blood sugars really causing me damage? Do I have enough supplies: insulin, pills, test strips, metre, glucose tablets? If I'm travelling, do I have spares? How will I keep my insulin cold? Do I need a doctor's note to get through a security check?

All of this is enough to drive anyone crazy but once you discover that other people are going through the same thing, it’s very comforting, not only for parents of young ones with diabetes but also for adults like me. That’s where being part of an online community can help as it becomes a new family that provides support: these people understand what I'm going through and no one else can make that claim, not even a doctor.

In addition to in my own individual experience, social media have played a key role in my entrepreneurial venture Team Type 1 and Team Type 2. Founded in 2004, we are a team of professional cyclists who compete at the highest level despite having diabetes. Our organisation increases awareness of diabetes and demonstrates that diabetics can live life to the full. My Type 1 and Type 2 fellow athletes and I aim to instil hope and inspiration in people around the world affected by diabetes; to show them that with appropriate diet exercise, treatment, and technology, people with diabetes can achieve their dreams.

We’ve engaged in conversations with our fans through the social media and many of them contribute their own stories, while telling others about our events worldwide. They’re our biggest advocates and anyone affected by diabetes is welcome to become a member of our team. This is our community and we choose to speak to each other about anything and everything, anytime and anywhere – online. The success of social media campaigns like that of Team Type1’s begs the question: is it finally time for the large healthcare companies to stop hiding behind the excuses of liability and recognise the existence of the single biggest educator on chronic disease by proactively engaging the online community rather than merely reacting to it?

The second INSEAD Alumni Healthcare Summit was held in Paris on October 8, 2010.

Comment
DUFFY,

A really interesting insight into someone who lives with type 1 diabetes every day.
At DWA we run an email/phone DIAL information line for people with diabetes. People can call or email their questions about living with diabetes.
We also have a chat line called YWAIT for people living with type 1 to talk to one another.
Hope that we are doing our part

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