Diabetes Daily

Global Survey on Do-it-Yourself Artificial Pancreas System (DIYAPS) – Diabetes Daily

By Saskia Wolf, Communication and Dissemination Manager, OPEN

Please support a research study by and for people with diabetes!

At the moment, OPEN is conducting a GLOBAL SURVEY and needs the support of the Diabetes Online Community; this means we need YOUR support. If you are a person with diabetes or a parent/caregiver of one, please participate, whether you are using a DIYAPS or not! More Information is provided on the OPEN website, as well as FAQs and tutorials: https://open-diabetes.eu/open-survey

We all know that diabetes is difficult to live with. It’s all on you to keep yourself alive, and to avoid the chronic effects that won’t present for many years. And no, it’s not easy to just “be disciplined” and keep your blood glucose in a healthy range!

People with diabetes sometimes need help, but not in a paternalistic sense that interferes with daily life. Besides a supportive healthcare professional team and loving family and friends, what does help look like?

For many years, proprietary medical devices were the only help people with diabetes had to manage their condition. Continuous glucose monitors and insulin pumps took a lot of the burden (and pain) away from managing diabetes, but they had limitations. Devices couldn’t talk to each other and had to be manually set; this “open loop” system lacked automation.

Because of these unmet needs, patients developed their own closed-loop systems. Yes, patients — software developers, engineers and other tech-savvy people as part of the #WeAreNotWaiting movement. They created algorithms, made devices talk to each other, and ended up with an automated insulin delivery system that automatically adjusts insulin delivery based on glucose levels to prevent going too high or low. These systems are free and open-source; despite the challenges in building them, the number of people using a “Do-it-Yourself Artificial Pancreas System” (DIYAPS) is steadily increasing.

Users of these systems report tremendous improvements not only in their HbA1c levels, but also in their quality of life. They can finally get a break from managing their diabetes, as well as sleep through the night without CGM alarms or fear of their glucose levels getting too low. But are these systems as life-changing as they sound? What are the barriers for people to build their own systems?

Some healthcare professionals are skeptical; scientists prefer academic studies to social media posts, and thus far most studies have only had small cohorts. There was a need for a concerted research project, led by scientists, clinicians, and users of a DIYAPS alike. This was the genesis of the OPEN Project EU.

The OPEN Project has received funding from the EU Horizon 2020 RISE program to investigate various aspects of DIYAPS, working directly with patients and healthcare professionals. Please visit our website for further information on the project, our team and our publications, follow us on Twitter and visit our Facebook page (@OPENDiabetesEU) and subscribe to the newsletter.

Thank you very much!



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