Saturday, 8 March 2014

The Diabetes Online Community and Our Diabetes

After bouncing off stage I let out a huge sigh of relief. I looked around and saw faces staring at me, smiling at me, nodding and clapping... It was a very surreal moment, but one that will stay in my mind forever. 

The annual Diabetes UK Professional Conference saw 3000 Health Care Professionals (HCPs) come together to discuss the latest developments in diabetes care, the technologies, the research, the innovations and provide the chance to connect them with other professionals from around the world. When I was asked to give a presentation about the Diabetes Online Community and Our Diabetes I was honoured. There are no other words to describe the feeling other than an honour to be able to stand alongside such influential people in the world of diabetes, and to promote and demonstrate to them the benefits that online communities can provide to their patients.

My presentation was given during the Quality in Care (QiC) Diabetes session (I was lucky to be given the opportunity of being a QiC judge last year) and would be showcasing two diabetes projects from last year's QiC awards. I was introduced by Jonathan Valabhji, the National Clinical Director for Diabetes in the NHS. If I wasn't nervous before my presentation... I certainly was now! 

Jonathan introduced me and the presentation began... I spoke about my particular reasons for finding the Diabetes Online Community (DOC), ways that I interact on social media, what the DOC is and what it has to offer patients, families and carers, and statistics from online diabetes searches. I wanted to emphasise the ever growing presence that diabetes has online and that, for patients and HCPs alike, this is our future, much like diabetes technologies that are used for our treatments, and it needs to be acknowledged and developed further.

"I needed support, but I needed to be seen as more than just a hospital number, more than a blood test, more than a dose of insulin. I needed an identity to help me to identify with my diabetes - that's why I found the DOC."

"It promotes self-management, facilitates face-to-face interactions, helps those who feel isolated and it also disarms the stigma associated with having diabetes that the media portrays. It shows the real faces of diabetes." 

Something else that I wanted to highlight is what social media and the DOC can deliver to HCPs... From a personal point of view it has helped me to develop a great deal of trust and understanding for professionals and their roles. Although I'm often told to be a "patient patient" being able to see the daily struggles and barriers that HCPs are up against when trying to develop better services for us, makes me appreciate and accept the reasons for why I may not always receive the care that I want. Not only that but it gives an insight into what I can do to help deliver and develop services. If HCPs weren't online, sharing their stories and showing their side of the NHS, then I wonder how ignorant I would be to what is and isn't possible... I feel that I would view my care as being very black and white, when in fact that is far from the truth.

Next I went on to talk about Our Diabetes, an online discussion that I co-founded and am proud to say has opened up a whole new concept to diabetes tweet chats. I explained that Our Diabetes provides a weekly twitter chat that is open to anyone who has diabetes or is in any way involved in it. That the aim is to support, empower, educate and connect like-minded people and to give them a platform to be heard from. I explained that HCPs can use the platform to find better ways to deliver care to their patients, to ask what we need from a service, what can be done to improve experiences and the best ways to engage with those who have diabetes. 

"We help to bridge the gap between appointments as well as continually working with people to develop their confidence and goals for future appointments. By communicating we can share knowledge in a welcoming, safe and transparent environment."

15 minutes is only a short time to get across the message that the diabetes online community and Our Diabetes can be a turning point for people and that it can provide a constant motivation to stay on track throughout life with this long term condition. In that 15 minutes I gave a personal accounts of my life before using social media as part of my diabetes treatment... I wanted it to be real; to come from real experiences and to deliver it with real emotion... I feel that this was what set me apart from the other talks and lectures and judging by the response from the audience, it worked.

But it doesn't stop there... We need to keep the momentum going, keep thinking of new and innovative ways to engage with HCPs so they can "prescribe" the option of social media as part of diabetes treatments (as one member of the audience put it). Before my presentation I knew the importance of working with HCPs but now I understand it... Social media can be a scary place, but the pros far outweigh the cons... I think anyone that uses the Diabetes Online Community is proof of that. 

Ninjabetic x

© Ninjabetic

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