TeQfor1 – Impacts of technical systems on the personal quality of life of people with type 1 diabetes
- Project team:
Helmholtz Association of German Research Centers
- Start date:
- End date:
- Project partners:
Institut für Diabetesforschung und Metabolische Erkrankungen (IDM) at Helmholtz Zentrum München; GECKO - Institut für Medizin, Informatik und Ökonomie at Heilbronn University of Applied Sciences
- Research group:
Type 1 diabetes (T1D) is chronic condition where the pancreas no longer produces insulin. This must be administered externally after calculating the respective requirement. Achieving the targeted blood glucose levels is extremely difficult, and there is the potential for serious acute and long-term consequences. Being affected by T1D means lifelong constant self-control, which rarely leads to stable values. For some years now, research has been conducted into developing artificial pancreas systems (APS) (also known as closed loop systems or automated insulin delivery systems) which are intended to enable automated insulin delivery according to blood glucose levels. Such systems would make it much easier for people with T1D to deal with their disease. However, current APS versions are still far from actually replacing pancreatic function. In addition, these systems have so far been developed mainly without the involvement of people with T1D, and it is unclear whether they are geared to the actual needs of those affected.
Therefore, people with T1D and their relatives have formed a community under the hashtag #WeAreNotWaiting, expressing hereby the conviction that they can develop better solutions for their specific requirements than offered by the conventional health care system to date. The community innovatively develops their own technologies based on commercial technologies and makes them freely available. These developments now enable algorithm-based delivery of insulin doses adapted to continuously measured tissue glucose values in order to keep blood glucose levels in a safe range. They are far more effective than conventional systems.
However, to date, there is hardly any systematic evaluation of their effectiveness, e.g., with regard to improving the quality of life. Thus, an evaluation of such systems by citizens living with type 1 diabetes or caring for children with type 1 diabetes is of high relevance, especially since the citizens who are affected by type 1 diabetes and constantly have to deal with the disease bring absolute expertise to the development process.
The TeQfor1 citizen science project provides users of such systems with a scientific approach that enables them to make a sound and valid assessment of DIY technologies, focusing on their own criteria. Citizens using any type of DIY APS and possibly other DIY technologies for treating type 1 diabetes for themselves or their children will investigate how this use affects their blood glucose levels and their quality of life. The criteria or factors for assessing the quality of life are first defined by the citizens themselves. This gives participants the opportunity to generate data for scientifically sound studies on an important topic that has so far been largely ignored by official research.
Interview on TeQfor1 at Diabetes Beach Club (YouTube, German)
Project TeQfor1 on buergerschaffenwissen.de (German)
The Value of Citizen Participation in Technology Assessment, Responsible Research and Innovation, and Sustainable Development
2021. Sustainability, 13 (21), Article no: 11613. doi:10.3390/su132111613
TeQfor1: The Assessment of Open Source Health Technologies by Citizen Science
2021. Speaker Series Digital Citizen Science des Karlsruhe Decision & Design Lab (KD² Lab 2021), Online, July 6, 2021
Weißbuch: Citizen-Science-Strategie 2030 für Deutschland
Loop-Bewegung, Bodyhacking und Co
2020. Meeting of the German Association for Medical Informatics, Biometry and Epidemiology (GMDS), Meeting of the Central European Network (CEN: German Region, Austro-Swiss Region and Polish Region) of the International Biometric Society (IBS) including the 66th Biometric Colloquium of the German Region (2020), Online, September 6–9, 2020
Auswirkungen technischer Systeme auf die eigene Lebensqualität von Menschen mit Typ-1-Diabetes (TeQfor1)
2019. 2. Wissenstransfer-Tagung der Helmholtz-Gemeinschaft (2019), Berlin, Germany, December 9–10, 2019