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For people with diabetes, modern therapy methods such as sensors for continuous glucose monitoring and insulin pump therapy are available today. However, only a small percentage of patients achieve a glycated hemoglobin (HbA1c) level of <7.0%, as recommended in clinical guidelines.
In closed-loop systems, also called “artificial pancreas systems” (APS) or “automated insulin delivery” (AID) systems, a control algorithm continuously calculates the expected glucose values and the required insulin, and constantly adapts the insulin delivery via an insulin pump accordingly. The goal of these automated systems is to regulate complex glucose and insulin courses more safely, precisely and reliably than with conventional systems, and to facilitate diabetes management in everyday life. However, the approval process for closed-loop systems by regulatory authorities is often complex and time-consuming. Although a large number of closed-loop systems are under development in academic and industrial research, and isolated systems have recently become available in some countries, they are not universally available, accessible, affordable or individually suitable for all people with diabetes.
Behind the hashtag #WeAreNotWaiting, an online community of people with diabetes and their families has found ways to bide time until an “artificial pancreas” is commercially available. The “Open Source” or “Do-It-Yourself Artificial Pancreas Systems” are co-developed in the “DIYAPS community” (OpenAPS, Loop, AndroidAPS). Each user has to build his or her own individual system and uses it at his or her own risk. Instructions and code for these systems are universally available via open-source platforms. First observational studies on DIYAPS showed significant improvements in glycemic control, quality of life, and sleep quality in DIYAPS users of all age groups, including children and adolescents.
The “OPEN” project brings together an international and intersectoral consortium of patient innovators, clinicians, social scientists, computer scientists and patient advocacy organisations in order to investigate various aspects of Do-it-Yourself Artificial Pancreas Systems (DIY APS) that are used by an increasing number of people with diabetes:
- Do these systems have an effect on health and quality of life of the users?
- What experiences do users have with this technology, and can these experiences be used to improve closed-loop technologies?
- Can we further improve the predictions and therapeutic adaptations of the algorithms?
- Are there any obstacles for a further dissemination of the systems (e.g. age, gender, socio-economic status)?
- What can industry, research and other stakeholders learn from the #WeAreNotWaiting movement?
The OPEN project is funded for three years with a total of one million euros by the Horizon 2020 framework programme of the European Union.
In February 2020, the publication „Evidence on User-Led Innovation in Diabetes Technology (The OPEN Project): Protocol for a Mixed Methods Study“ (doi: 10.2196/15368) received a QUEST Award for Patient & Stakeholder Engagement.
- University College Dublin, Irland
- Charité – Universitätsmedizin Berlin, Klinik für Pädiatrie mit Schwerpunkt Endokrinologie und Diabetologie
- Steno Diabetes Center Copenhagen, Dänemark
- Copenhagen University, Dänemark
- Australian Centre for Behavioural Research in Diabetes, Melbourne, Australien
- Developers from OpenAPS and AndroidAPS
- #dedoc° Labs, Berlin, Deutschland