On 17th September 2015 the fourth annual International DOC Exchange conference convened with some familiar faces and some new ones. I have blogged about this event before here and here. Around the table there were voices from the online community, industry and a couple of silent voices – attendees who didn’t blog or tweet and who were unfamiliar with the Diabetes Online Community.
We were all brought together by Animas, a Johnson & Johnson company, to discuss various topics, share ideas, offer support and to learn about some returning participants’ projects over the past year. I cannot emphasise enough how much every attendee there appreciates the support from Animas for such an exchange. The fact that a major company recognises the importance of joining together our voices in a room without pushing their own agenda or products is a rare and precious thing. Having the opportunity to discuss lots of common concerns face to face with the luxury of time to complete dialogue is something that I personally find very special.
Kerri Sparling had, once again, compiled a conference agenda that challenged and gave space for dynamic and passionate discussion. And so the meeting began, after an excellent report from Animas about the CHOICE study and a fabulous artistic icebreaker (who knew we had so many talented artists around the table?!), with a difficult starter topic. As a group, we have, in previous exchanges, touched upon the importance of supporting every voice within the online community, not just the voice of people with T1 diabetes. We know the numbers of people with T2 outstrip those with T1, but in general, these people seem to be largely absent from the online community. Important questions were posed, not least should we be discussing how to bring T2 voices to the table without a T2 voice being present? In the UK there has been a very successful “No conversation about me, without me” campaign & this was at the forefront of our minds during the discussion, alongside the stigma that all members of the community face. During our discussions we tried to identify common ground and challenges faced by people with T1 and T2, and we all felt there would be value in having two parallel symposia which could have an overlap where we all joined together to discuss common ground and challenges. We concluded that it would be ignorant of us all to suppose the challenges of T2 were always comparable to those of T1 and we hope there may be an environment where the T2 voices can be united in a similar way to the T1 exchange. Watch this space!
Hearing from members of the group about their different projects and achievements is always an inspirational part of this exchange – and non more so this year than hearing from Daniela about Portale Diabete – a community which she set up over a decade ago, continues to thrive thanks to her vision and passion to support every person whos lives are touched by diabetes. Together with Francesca, they have made Portale Diabete an inclusive community which joins voices and supports everyone.
An important project that I have supported for a little while now is IDF’s Life for a Child. Every Valentine’s Day, people are encouraged to send just eleven red roses and donate the cost of the twelfth to the Spare a Rose project. By donating the cost of just a single rose (£3 in the UK), one can cover the cost of insulin for one child in the developing world for one month. Its that simple. For the cost of a cup of coffee, a child can live, for a month. I love that its that easy! It is such a tiny amount, with the best possible impact, that I decided to forgo a coffee or two a month and set up a direct debit so I know every month, there is another child who is alive because they now have access to insulin.
There were discussions about the psychosocial impact of T1 upon not only the person with T1 but also those around them who care for them (there were a couple of us non T1 parents at the table) and the group compared experiences from around the world. The results were very mixed – it became clear that this is still an area of care where access not only varies wildly from country to country but even within borders. Without a cohesive and comprehensive approach, too many people are being let down and not receiving help and support at point of need. We resolved to continue the conversation virtually and ensure we share the good practises so that care may be improved across the board.
The second day started as early as the first and opened with the topic of burnout. Not solely restricted to diabetes burnout here, but looking more at social media burnout too. Many of the people around the table work within the diabetes industry, whether as a patient advocate, in the charity sector, or running established online organisations and groups. Some of us at the table have forgone a real live social life in order to engage in the online community and offer support to whoever asks. Burnout is a big deal in each of these groups. How much of ourselves do we share? How much do we keep to ourselves? How do we protect our personal information and that of the people we love? The discussion served as a reminder just how much flack can be hurled by faceless online accounts but it wasn’t all negative. The support we as a group can provide to one another and the real difference that the work of everyone there has made to people’s lives across the planet cannot be overestimated. Those gathered around the table are passionate people motivated only by making a positive impact to people with diabetes, children with diabetes, their carers, spouses and friends. Our discussion helped to exorcise our negative experiences and reinforce the value of the online advocacy we all strive to achieve.
Finally there was also possibly one of the most important topics raised of the entire agenda. “How patients can build a case for industry & how industry can build a case for advocacy”. As patients, the group completely understands that industries have a bottom financial line. We are not seeking to rewrite capitalism in any way, but there was a very strong desire for patients to be at the centre of anything industry is trying to achieve. A wonderful quote from the room was “Ask the patient what will help, not how much money they will spend.” As PWDs and carers of CWDs, the question was posed “What do we want from industry?” with the follow up questions being “What can they learn from us?” & “How can the diabetes community, as a whole, improve through these relationships?”. A thoughtful discussion ensued where empathy was discussed – the need for more from both sides, and the fact that this is a relationship which both sides are heavily invested in and both sides need to be strong and robust. As a community, without industry continuing to invest and develop improved ways to manage the rollercoaster that is Type 1 diabetes, then the community would feel abandoned and forgotten. As if insulin really were a cure for T1. Likewise, industry needs the community to engage so it can channel its resources into tailored and relevant developments that are truly what is desired by the community, not just ones that will turn the biggest profit.
The overwhelming feeling in the room was one of warmth towards Animas for bringing us together once more, so that we can continue the dialogue that has been ongoing in this forum now for 4 years. That Animas gives us space to converse and work together without a desire to force their own agenda is something every attendee around the table values most highly. That really does play into the sentiment that they truly want to support us, not just turn a profit from us.
I truly hope I will be invited to attend the Fifth Exchange in Munich next year and continue to work with this truly remarkable group of people I’m honoured to call my friends.