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Evidence on User-Led Innovation in Diabetes Technology (The OPEN Project): Protocol for a Mixed Methods Study
Shane O'Donnell1, Dana Lewis2, María Marchante Fernández1
1School of Sociology, University College Dublin, Belfield, Ireland.
JMIR Research Protocols
|November 20, 2019
Summary
People with diabetes are creating their own Do-It-Yourself Artificial Pancreas Systems (DIYAPS). This research investigates the effectiveness and quality-of-life benefits of DIYAPS, aiming to improve patient-centered innovation in diabetes management.
Area of Science:
- Digital health innovations
- Patient-driven healthcare solutions
- Chronic disease management technologies
Background:
- Traditional healthcare innovations follow a top-down approach, with limited patient involvement.
- User-driven, open-source health initiatives are gaining traction.
- The Do-It-Yourself Artificial Pancreas Systems (DIYAPS) movement empowers individuals with diabetes to create their own management tools.
Purpose of the Study:
- To establish empirical evidence for the clinical effectiveness of DIYAPS.
- To evaluate the quality-of-life benefits associated with DIYAPS.
- To identify challenges and solutions for wider DIYAPS adoption.
Main Methods:
- A 5-work package research program examining DIYAPS outcomes and scalability.
- Utilizing quantitative and qualitative methodologies for clinical and self-reported measures.
- The OPEN project is a unique, user-driven initiative with a research team comprising active DIYAPS users.
Main Results:
- The project is funded by the European Commission's Horizon 2020 program.
- Recruited researchers from academic and non-academic backgrounds to drive research.
- Findings are disseminated to the DIYAPS community and stakeholders.
Conclusions:
- The OPEN project represents a unique, patient- and user-led research model.
- It fosters international, interdisciplinary collaboration among healthcare professionals, developers, and scientists, many with diabetes.
- This collaborative approach aims to create patient-centric innovations and reduce the burden of diabetes.
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