Spotlight on online peer support at the EASD conference
Online peer support was highlighted at EASD 2022, as diabetes advocates from around the world presented some of the work of the #dedoc° Diabetes Online Community and discussed their response to the pandemic. Dr Susan Aldridge reports.
Professor Chantal Mathieu, President Elect of EASD, welcomed a group of diabetes advocates from #dedoc° to a full house at the conference to talk about their peer support work. #dedoc° Diabetes Online Community is an international community run by and for people with diabetes. Founder and CEO Bastian Hauck, who also lives with type 1 diabetes, said: “People with diabetes need to talk and ask questions in this festival of science, for we are now part of the EASD community.” He acknowledged with gratitude that, uniquely, conference content was being streamed on YouTube and Facebook to the #dedoc° community.
Andrea Limburg from France, who has lived with type 1 diabetes for 25 years and has been a voice of the diabetes community for many of those, spoke about how online peer support had been adapted to the restrictions imposed by the COVID-19 pandemic. In France, for instance, pre-existing cookery and physical activity classes had quickly moved online, with technical support available for those who needed it, and a weekly email was produced.
In Southern California, they set up Facebook ‘Loop and learn’ sessions on the artificial pancreas and invited experts to YouTube to talk about diabetes technology. In Ireland, people with diabetes were cut off from their clinical teams for a long time, but went online and saw a huge growth in their Facebook attendance, and used the opportunity to invite in international expert speakers, without the cost of travel. And in Indonesia, they raised funds for glucose-testing supplies and organised an online conference for women. “When COVID-19 hit, we multiplied our peer support,” said Andrea. “Diabetes can be hard, but we don’t have to do it alone.”
Children with Diabetes
Jeff Hitchcock, Chairman and Founder of Children with Diabetes, whose daughter was diagnosed with type 1 in 1989 at the age of two, began by quoting Elliot Joslin ‘The person with diabetes who knows the most, lives the longest.’ “This is as true in the 2020s as it was in the 1920s,” he said. He set up Children with Diabetes to offer education and support to families affected by the condition.
Children with Diabetes adapted to the pandemic with a number of new digital offerings. They increased the frequency of their newsletter and their clinical writing, took to Zoom and organised ‘screenside chats’ and Q&A sessions with healthcare professionals. A virtual conference platform was set up and, naturally, social media presence was enhanced. Then, in 2021 after the introduction of the COVID-19 vaccine, they returned to in-person events. As a result, the digital reach of Children with Diabetes has increased, which brings more people – and now more adults than children with type 1 – into their community.
Supporting diabetic amputees
Salih Hendricks, diabetes advocate and diabetic amputee from South Africa, spoke about reaching out to build a community of those who have had an amputation. This is not a new idea, but COVID-19 meant they found new ways of bringing people together, through WhatsApp, Facebook and Twitter for peer support and peer advocacy.
“Diabetic amputee peer advocacy is about the power of sharing challenges and dealing with the day-to-day,” he said. The community uses ‘smoke signal media’, using printed material to reach those communities who may not have the technology to communicate through online channels. This is true of many in South Africa, where illiteracy can also be a problem. “We go out there with our lived experience and pass on that you are not alone,” Salih said. “We encourage people to be independent through what they can achieve through exercise, paperwork and appointments, and not to be embarrassed about anything.”
The amputee community is on board with the multidisciplinary care that is so important in this context. They work with healthcare professionals who often offer their services free to those who otherwise couldn’t afford them. “Being a part of #dedoc° has taken me to another level of advocacy,” Salih concluded.
Tom Dean, UK, introduced the all-new Twitter #DiabetesChat. Since recently getting a Freestyle Libre, he has embraced his own diabetes, whereas before he didn’t tell people about it. “#DiabetesChat is a new global community. It aims to raise awareness and unite people in a unique peer support group. All our support staff have diabetes themselves.”
Since February this year, #DiabetesChat has hosted 34 guest speakers, including healthcare professionals, advocates and sportspeople in their weekly chats, with nearly 3000 people listening in. Topics have included complications and insulin sensitivity. There is also a 24-hour Twitter space where people with diabetes can get together to chat. Tom urged people to get in touch at @diabetes_chat and diabeteschat.net.
Introducing #docday° and #dedoc° voices
Finally, Bastian noted that this is the 10-year anniversary of the #dedoc° community. Their first event was at EASD in 2015, when (unlike this year) they were not able to join the main conference. Instead, a group of diabetes bloggers gathered in a Stockholm café and created #docday°, which is a series of virtual events where diabetes advocates, healthcare professionals and industry partners are welcomed to present projects, initiatives and campaigns. At the same time, they set up #dedoc° voices, a scholarship programme that allows diabetes advocates to attend the EASD, Advanced Technologies and Treatments in Diabetes and the International Society for Paediatric and Adolescent Diabetes conferences. As with the EASD conference, content from the other two meetings are streamed for free to ensure that people with diabetes are included in the proceedings.
“Healthcare professionals should encourage people with diabetes to seek out peer support. We have noticed that there is sometimes some hesitation,” Bastian said. That may be because the person with diabetes feels embarrassed about their condition or the healthcare professional thinks peer support might replace the diabetes care they are offering. Being part of EASD – and not just a fringe movement – could help promote peer support. “At the bare minimum we want you, as healthcare professionals, to say ‘yes, do it’ to peer support,” Bastian said. “In other words, find your tribe. Love them hard.”
Any opinions expressed in this article are the responsibility of the EASD Programme Director, Dr Eleanor D Kennedy.