This webinar on online community building and advocacy was organised as part of the fourth edition of the European Diabetes Patient Advocacy Summit, where IDF Europe and Novo Nordisk joined forces to explore how patient organisations can best advocate towards different stakeholder groups to get diabetes (back) on the agenda, post COVID-19.
On the theme of ‘Let’s act together,’ this Summit Series consists of two winter webinars and a two-day face-to-face summit to be held in the spring of 2022 in Copenhagen. The second webinar was held on February 3, 2021. The objective was to explore various aspects of online community building and the use of the online community for advocacy purposes. Bastian Hauck, IDF Europe´s Board member and the webinar moderator, along with Liv Nordin Christensen, Public Affairs Manager, Diabetes & CV, Region Northwest Europe at Novo Nordisk, welcomed all participants.
After some introductory remarks on the highlights of the previous webinar, Bastian invited representatives from three national diabetes associations to share their experiences of building online diabetes communities. Gaby Allrath, from Diabetes DE (Germany) explained how the association raised the voice of people living with type 2 diabetes (T2D) by creating the Type 2 Alliance, an online community, in collaboration with multiple stakeholders. Seventeen organisations came together for the Type 2 Alliance project from peer support groups to publishing companies. The initiative started with a market research to identify the wishes and concerns of T2D patients to create a website and then an email campaigns was launched to create a community of 1,000 T2D patients. Chloe Olivella and Coline Hehn from the French Diabetic Association presented the “slow diabete” initiative which brings together 11,000 patients enrolled in different virtual coaching programmes with interventions from diabetologists to psychologists and dieticians. The “slow diabete” community also brings together 4,500 patients in a successful private Facebook group allowing for peer support and experience sharing. Davore Skeledzija from the Zagreb Diabetes Association (Croatia) outlined how the association leveraged the community of people living with diabetes in Croatia to successfully influence policymakers into providing continuous glucose monitors, reimbursed by the government.
The panel discussion that followed was a very interactive exchange of views between Renza Scibilia, T1D advocate and manager of T1D and communities at Diabetes Australia, and Danielle Drachmann a ketonic hypoglycemia advocate and founder of Ketonic Hypoglycemia International.
Both panellists fully agreed on the importance of online patient communities in providing peer support and sharing experiences that can help those in need. “I truly believe that peer support elements are as important as the other aspects of diabetes management” said Renza Scibilia. The online diabetes community has been thriving for the last decade and is adapting to new social media channels such as Instagram and TikTok. Danielle Drachmann impressively built a community of 1,500 ketonic hypoglycemia patients families from over 60 countries from scratch by using her network and building up the infrastructure behind it. Danielle Drachmann further stressed “Advocacy and community building have changed my whole life and have created hope for not only myself but thousands of families all over the world”. Both panellists also fully agreed on the need to unite the scientific discourse with the voice of patient communities to advocate change most effectively “combining latest evidence with personal stories allows us to reach the heart and minds” said Renza. Renza and Danielle both provided examples of how they managed to use online communities combined with scientific evidence in their home countries to put pressure policymakers into reimbursing CGM partially or fully.
Further discussion on how to put diabetes high up on the political agenda will be held at the two-day summit in Copenhagen on 30-31 March 2022, where representatives of national diabetes associations will actively engage with one another.