JMIR Publications

ABSTRACT

Background:

Digital innovations in healthcare have traditionally followed a top-down pathway, with manufacturers leading the design and production of technology-enabled solutions and those living with chronic conditions involved only as passive recipients of the end-product. However, user-driven open source initiatives in healthcare are becoming increasingly popular. An example is the growing movement of people with diabetes, who create their own “Do-it-Yourself Artificial Pancreas Systems” (DIYAPS).

Objective:

The overall aim of this project is to establish the empirical evidence base for the clinical effectiveness and quality of life benefits of DIYAPS and to identify the challenges and possible solutions to enable their wider diffusion.

Methods:

A research program consisting of 5 work packages will examine the outcomes and potential for scaling up DIYAPS solutions. Quantitative and qualitative methodologies will be used in order to examine clinical and self-reported outcome measures of DIYAPS users. The majority of the members of the research team live with type 1 diabetes and are active DIYAPS users, making OPEN a uniquely user driven research project.

Results:

This project has received funding from the European Commission's Horizon 2020 Research and Innovation Programme under the Marie Skłodowska-Curie Action Research and Innovation Staff Exchange (RISE). Researchers with both academic and non-academic backgrounds have been recruited to formulate research questions, drive the research process and disseminate ongoing findings back to the DIYAPS community and other stakeholders.

Conclusions:

The OPEN project is unique in that it is a truly patient/user led research project bringing together an international, interdisciplinary and intersectoral research group consisting of healthcare professionals, technical developers, biomedical and social scientists, the majority of whom are also living with diabetes. Thus it directly addresses the core research but also user needs of the DIYAPS movement. As a new model of cooperation, it will highlight how researchers in academia, industry and the patient community can create patient-centric innovation and reduce disease burden together.