Accepted for/Published in: JMIR Research Protocols
Date Submitted: Jul 4, 2019
Open Peer Review Period: Jul 8, 2019 - Jul 22, 2019
Date Accepted: Oct 30, 2019
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Outcomes of Patients’ Evidence with Novel, Do-it-Yourself Artificial Pancreas Technology (OPEN): How Academia, Industry and Patient Innovators Can Reduce the Burden of Diabetes - Together
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. A leading 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 build empirical evidence on the DIYAPS movement and to investigate its outcomes, as well as challenges and implications for its 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 techniques will be used in order to examine clinical and patient-reported outcome measures of DIYAPS. The majority 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 also living with diabetes. Thus it directly addresses the core research but also user needs of the DIYAPS movement. The result will be a new model for co-creation that will highlight how researchers in academia, industry and the patient user space can create patient-centric innovation and reduce disease burden together.
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Copyright
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