OPEN – Outcomes of patients' evicence with novel, do-it-yourselv artificial pandreas technology

Digital innovations in healthcare up until recently have typically followed a ‘top-down’ pathway, with manufacturers leading the design and production of technology-enabled solutions and patients involved only as ‘users’ of the end-product. However, this is now being disrupted by the increasing influence and
popularity of more ‘bottom-up’ and patient-led open source initiatives. A leading example is the growing movement of people with diabetes (PwD) who create their own ‘‘do-ityourself’’ artificial pancreas systems (DIY APS) through remote control of medical devices with an open source algorithm.
The EU-H2020 funded project ‘‘OPEN’’ brings together an international and intersectoral consortium of patient innovators, clinicians, social scientists, computer scientists and patient advocacy organizations to establish an evidence-base surrounding the impact of DIY APS on PwD and wider healthcare systems. Its
aims include the following: 1) to examine the clinical and quality of life outcomes, as well as lived experiences, of DIY APS users through a variety of quantitative and qualitative approaches; 2) to make technological improvements in DIY APS through improving the user experience as well as the predictive capacity of such systems; 3) to explore barriers to scale-up, such as socioeconomic, gender, ethnic and age-related inequalities in access to Technologies needed for DIY looping, and how they might be resolved.
The DIY APS movement is an exemplary case study of historical significance, and this research will have important lessons and implications in a context where informed and connected patients are driving and challenging current care models and paradigms of medical innovation and regulation.