So, shall we dance? Basic steps to open scientific conferences to people living with diabetes
If you ever go to a scientific conference, you'll find that patients aren't the first guests at the party. But over the past decade, hundreds of patient advocates have been able to infiltrate the diabetes bubble thanks to the #dedoc° voices program. In September 2022, the organisation and its founder — German activist Bastian Hauck — were back on the dance floor. They hosted the only session at the European Association for the Study of Diabetes (EASD) Annual Meeting in which patients were truly VIPs.
#dedoc° founder Bastian Hauck speaks at the #dedoc° symposium at EASD 2022. Source: Nina Tousch/Glucose Toujours
Let's not forget that people living with diabetes and their caretakers have a place at medical conferences. This is a message we don't hear often enough in my home country, France. If you are interested in receiving a scholarship to attend the latest diabetes conferences, the #dedoc° voices scholarship program can open those doors for you.
#dedoc° voices at EASD 2022
The #dedoc° symposium at EASD 2022 began with a welcome message from Chantal Mathieu, EASD’s Senior Vice President:
“Welcome to probably the most important members of the team when it comes to treating people living with diabetes, namely the people living with diabetes. [...] You need to let your voices be heard in this festival of science. [...] Ask critical questions. What young scientists and young researchers need is people living with the diseases asking relevant questions. [...] Ask them what it means to you as a person living with diabetes.”
EASD Senior Vice President Chantal Mathieu and #dedoc° founder Bastian Hauck at EASD 2022. Source: Nina Tousch/Glucose Toujours
Chantal Mathieu is an icon in the diabetes scientific community. She holds several academic and medical positions, but the one that catches our attention the most is that of sponsor of the diabetes online community (DOC). She has been supporting Bastian Hauck's project since the beginning and defends the idea that the place of patients is alongside health professionals.
Diabetes patient advocates at scientific conferences
This is still a rare enough concept in the scientific world. Rare enough in fact to be highlighted as a slogan for an Autumn/Winter collection of CGM stickers. In France, for example, individual patients are not accepted at medical conferences run by the Société Francophone du Diabète [Francophone Diabetes Society].
But as with Rome, the patient invasion of conferences didn't happen overnight. It started in 2015, right here (sic) in Stockholm with a group of bloggers living with diabetes gathering in a co-working space only a few hundred metres from the conference hall. At the time, patients had to be sponsored by an industry partner in order to access the conference.
#dedoc° voices: a scholarship program for diabetes advocates
Today, these industry partners support the #dedoc° voices scholarship program, allowing #dedoc° to fly in patient advocates from all over the world and grant them access to conferences. Diabeloop is the only French sponsor among them. Last year, the twenty-five #dedoc° voices selected to attend EASD in person (not to mention those #dedoc° voices who attend the conference online) came from Ireland, South Africa, France, Germany, Pakistan, South Korea and beyond.
The strength of the program lies in the fact that it brings together a plurality of activists, with voices as different as they are powerful. It adapts, transforms and evolves at the pace of its members. “The #dedoc° voices program goes where you want to go. It is a project where the stars are you, the diabetes activists,” Bastian Hauck reminds us.
#dedoc° symposium at EASD 2022. Source: Nina Tousch/Glucose Toujours
#dedoc° voices is also the proof that social networks and diabetes dance well together. The online dynamics that developed during the pandemic have given wings to the program. From virtual community events (#docday° and #docnight°) to online conferences: #dedoc° has succeeded in mobilising the community worldwide. Today, the virtual community has over 150 members. Among them, there’s as many French advocates as hypo treats in your kitbag.
#PayItForward
Like undercover spies, the #dedoc° voices have a mission: to share the information they learn at conferences with their community and their followers. The community has its own 2.0 language based on hashtags. In fact, the #dedoc° voices use a plethora of hashtags and we think it's worth explaining them because if we don't, you may well get lost.
#dedoc° voices: "de" for "deutsche" (the project was born in Germany), "voices" for voices and the "°" represents the diabetes circle. Yes, it is very subtle; they went far in the symbolism.
#PayItForward: refers to the transmission of knowledge. The #dedoc° voices have a mission: to share their knowledge with their respective communities on social networks.
#NothingAboutUsWithoutUs: symbolises the willingness of patients to be present when the health of people living with diabetes is discussed.
#docday° and #docnight° refer to live online community events.
Now that you have the basic steps, let's continue.
Diabetes is not a dance battle between patients and caregivers. It's a three-beat waltz: one the healthcare professionals, two the patients, three the social networks.
“We need healthcare professionals to teach us the rules so we can then safely break them,” Renza Scibilia emphasises with a laugh. She is Head of Advocacy at #dedoc° and a world-renowned Australian activist. Well, it's true that sometimes we're a step ahead of them: DIY closed loop is a perfect example of this.
The #dedoc° voices scholarship program seeks to change the paradigm of medical conferences. It proves that a scientific conference can take different formats and, under certain conditions, welcome patients onto the dancefloor. Organisers, if you are wary of patients, remember the prophetic words of the Belgian singer Stromae: “When there’s no more, there’s still more”.
So, shall we dance?
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This article was originally published in French by the independent diabetes news publication Glucose toujours on 20 September 2022.