Yesterday was the first meeting in regards to ISPAD 2021.
Our #Dedoc° Voices Networking Event with our partners included representatives from Novo Nordisk, Diabeloop, Tandem and Ascensia, as well as questions sent by Eli Lilly. Dexcom and Medtronics also attended, showing their interest in the patient voice.
We started with an introduction by Jamie Woods, ISPAD’s Director of Communications.
She introduced ISPAD and its focus on all types of diabetes in children and adolescents, as well as the 3 pillars of science, education and advocacy to improve outcomes.
In regards to advocacy in particular, ISPAD is including more people with diabetes on their conference planning committee, ensure there are people with diabetes represented amongst their reporters and for the first time patient advocacy is getting its own space at ISPAD in form of the Dedoc Voices Symposium – What we wish you knew and why. This will be the first time Dedoc is not only associated with ISPAD but is presenting the patient voice directly to industry professionals.
The hashtag #NothingAboutUsWithoutUS is a very fitting description of how many people living with diabetes feel in regards to this and will hopefully help to bridge the gab between medical professionals and patients.
Another exciting announcement by Jamie Woods was the inclusion of Patient Advocate as a membership category for ISPAD members. Historically, ISPAD was more for medical professionals, physicians, nurses or students, but now patient advocates are able to join as well.
Ascensia’s Joseph Delahunty talked to us about their outreach programs with a big focus on art and photography. Their newest campaign for World Diabetes Day on the 14th November is titled This is Diabetes and involves a photography and art campaign to show what diabetes means to you. Anyone can take part on https://thisisdiabetes.com/
It was really good to hear from a company that supports art and creativity so much within the diabetes world and a lot of Ascensia’s questions to us were in regards to outreach, how to connect, where to share and interact more with advocates around the world.
Marlene Spielman from Novo Nordisk talked about their advisory board of patient leaders, as part of their DEEP (Disease Experience Expert People) program.
Their focus is on raising awareness and reducing stigma in regards to living with diabetes. In particular they are putting a big emphasis on engaging the diabetes type 2 community by actively reaching out and using a more inclusive language when talking about diabetes. There are many challenges and successes that type 1s and type 2s share. It was discussed within our group that the type 1 community can often be a bit discriminatory against people with type 2 diabetes, which doesn’t help the overall image of people living with diabetes.
There was a lot of discussion in regards to insulin access worldwide, both logistically as well as financially. Novo Nordisk’s survey questions were very much focused on this as well and they confirmed that they will report back on how they will use the feedback we gave via the survey answers.
Diabeloop also talked about advocacy and had more specific questions in regards to technology, how we use it, what we wish for and how we would love our diabetes devices to look or be like. They also discussed access and seemed keen to hear our opinions on closed loop systems too.
Lastly, Tandem’s Blair Ryan also spoke to us about access, asked what is important to us and how we’d like to interact with Tandem. She also told us that some countries had reached out to Tandem and they were already discussing the new roadmap. Things like new language features for other countries are also being discussed about their development teams.
Tandem was also keen to find out how best to connect with patient advocates and share events and information.
It was amazing to see the willingness of these big companies to engage with patient advocates, to listen to us, to take on board our feedback and to find new ways to communicate with us. It was also great to see the discussion about accessibility and advocacy being talked about so freely. It sets a great example for other patient advocacy groups and other companies worldwide to connect with each other more, listen to feedback and find ways to improve the current situation.
With the first networking event out the way, I am very excited to see what this week’s ISPAD 2021 will bring and I am especially keen to see how the patient feedback is being received.