What We Wish You Knew About Diabetes and Technology
At the ATTD 2023 conference, panelists during the #dedocº Symposium highlighted how access and personalization impacts people with diabetes’ uptake and use of diabetes technology and why citizen science is so vital to solving these issues.
Diabetes technology and devices have the power to revolutionize the way someone manages their diabetes. But there are still barriers to diabetes technology that people living with the condition encounter every day.
At the Advanced Technology and Treatments in Diabetes (ATTD) 2023 conference in Berlin, Germany, diabetes advocacy organization, #dedocº, known for its “we are not waiting” slogan, hosted a symposium that gave advocates the chance to share some of these barriers and challenges with healthcare professionals, researchers, and other people with diabetes.
The panelists covered a wide range of topics, from DIY automated pancreas systems (APS) to managing diabetes throughout the female life spectrum to technology access in Africa. But there was still a clear theme that emerged. Two of the largest challenges that people with diabetes face when using technology across the world include accessing that technology and being able to find technology that is personalized for them.
When it comes to access – there are many different perspectives to consider. On one hand in many lower and middle income countries, issues with infrastructure, literacy rates, stigma and discrimination, and poverty all prevent people with diabetes from accessing even the most basic tools to manage their diabetes.
Hamidah Nabakka of Uganda who has type 1 diabetes and is a project coordinator at the Sonia Nabeta Foundation based in New York which is focused on Uganda and Sub-Saharan Africa shared the reality of type 1 diabetes in her country with the audience at the #dedocº symposium. She explained that when we think about access, it can’t only be in relation to getting the newest and shiniest gadget.
“How can you inject [insulin] when you have no food?” asked Nabakka, “How can you find transport to a clinic?”
Plus, insulin, internet access, and even electricity are a luxury for many people in Africa. What good is a CGM [continuous glucose monitor] if a person cannot charge the receiver or download their data?
In higher income countries, access issues still exist, they just might look a little different. Regulatory barriers that prevent technology from being approved for use and prohibitive costs keep these devices out of the hands of all people with diabetes. That is part of the reason that DIY APS has been so important.
These systems allow people to build their own automated insulin delivery system using existing hardware and open source algorithms that anyone can download and use. And as one of the panelists, Dr. Katarina Braune from the Charite University Hospital Berlin, shared, the data on these systems show that they lead to improvements in A1C, Time in Range, and quality of life.
Braune has type 1 diabetes herself and her research (The Outcomes of Patients’ Evidence with Novel DIY APS or OPEN Project) which recently completed and analyzed data from over 10,000 people using DIY APS shows how these systems benefit people – especially when they may not be able to get access to commercially available automated insulin delivery systems.
DIY APS not only addresses issues of access, however, it can also help solve some of the barriers created by the need for personalized devices.
Minou Van Os, a PhD candidate at the Department of Medical Psychology, Radboud University Medical Center has had type 1 diabetes for over three years. At the symposium, she shared a personal story from when she was diagnosed and looking for information on diabetes devices.
“I tried to look for the best solution for me, to make my life easier, to live my life with diabetes and not the other way around,” she said.
Specifically, she remembers taking a quiz that was supposed to tell her what combination of diabetes devices would be the best fit for her based on her lifestyle and preferences. But after entering all her information, the quiz returned a short, impersonal message: “Nothing fits your preferences.”
But she refused to accept that answer and began searching for more information. It wasn’t until she scoured the internet and had conversations with the diabetes online community that she discovered DIY APS and finally found a system that did work for her. And while no individual piece of diabetes technology is one size fits all – even though many try to be, DIY APS gave her more freedom than the commercially available systems.
Another panelist, Dawn Adams, a PhD researcher with type 1 diabetes at Ulster University in Northern Ireland, touched on the topic of personalization as well. She did so through the lens of citizen science or the involvement of the general public in scientific research. In her talk, she shared her own experiences searching for information to help her use technology and manage her diabetes throughout her menstrual cycle, during pregnancy, and during menopause.
“Check your glucose levels more regularly,” said Dawn, was the only advice she found.
There was simply no real information for people living with this condition and going through these life phases. And that was clear in how the technology operated as well – there’s quite a few automated insulin delivery systems with a “sleep mode” and an “exercise mode” but not a single one has a “menstruation mode” or a “pregnancy algorithm.”
Adams explained this is why citizen science is so important – it opens up conversations and brings to light real world challenges that people with diabetes face, encouraging scientists to prioritize research important to people with diabetes.
Adams’s talk highlighted the importance of the #dedocº symposium as a whole. When people with diabetes are given a seat at the table, it only strengthens the science that healthcare professionals, industry professionals, and researchers are working on. These advocates were able to bring to light how access and personalization impact their technology use and they challenged the audience to help find solutions.