OPEN · Outcomes of Patients’ Evidence With Novel, Do-It-Yourself Artificial Pancreas Technology
Horizon 2020 — Marie Skłodowska-Curie Actions
- Duration
- 2019-02-01 → 2023-04-30
- EU contribution
- €1,021,200
- Participants
- 11
- Scheme
- MSCA-RISE
Lines connect the coordinator with its partners. CORDIS does not always give exact coordinates for projects before 2014. These points are placed at city or country level.
Results in brief
Outcomes of Patients’ Evidence With Novel, Do-It-Yourself Artificial Pancreas Technology
Diabetes management is a relentless 24/7 job. In addition to life-threatening physical complications, the burden of diabetes can lead to psychological distress, anxiety and depression for people with diabetes (PwD) and their families. The concept of an automated insulin delivery system (software that automatically adjusts insulin dosage with a pump according to predicted blood-sugar levels) is a promising approach to managing diabetes. It improves glucose levels while reducing the emotional and cognitive burden of living with diabetes. An algorithm takes over decision-making from the user, calculating predicted glucose levels every 5 minutes and adjusting insulin delivery accordingly — similarly to the pancreas of a person without diabetes. However, the research, commercial development and regulatory approval of such technologies have been piecemeal and slow. So tech-savvy patients started the grass-root movement “#WeAreNotWaiting” and built their own open-source AID systems. Based on the principles of open-source sharing and the mantra of ‘paying it forward’, this online community has helped over ten thousand people worldwide to build their own system for automated insulin delivery, and the uptake continues to grow. OPEN is a patient-led research project that is gathering evidence on the experienced outcomes of open-source automated insulin delivery systems (open-source AID) to better understand the impact they have on the lives of people with diabetes. Through this research, OPEN has established an international consensus statement with practical guidance for healthcare professionals on open-source AID; received funding and awards from various organisations; and hosted public engagement events to foster dialogue between key stakeholders.
Data: CORDIS, © European Union
Project objective
Type 1 diabetes is a rare but highly challenging chronic condition which often leads to lowered life expectancy and greatly diminished quality of life even amongst those patients who are the most diligent and proactive in the practice of disease self-management. In recent years, there has been a growing movement of ‘patient innovators’ leading the development of self-built or ‘do-it-yourself’ artificial pancreas systems (DIYAPS), which help to automate day-to-day decision making needed for successful self-management. There is prima facie evidence to suggest that such systems can lead to improvements in glucose outcomes that far exceed those offered by the most state-of-the-art commercially available solutions. The aim of this RISE project is to tap into the expertise and knowledge shared by these communities by bringing together an intersectoral and interdisciplinary research team consisting of patient innovators, academic researchers, healthcare professionals (HCPs) and NGOs to establish an empirical evidence base surrounding the impact of DIYAPS. The exciting programme of research includes training and networking for participating staff designed to encourage inter-disciplinary thinking and broaden career horizons, while the dissemination and public outreach activities will ensure that project findings reach key stakeholders, such as policymakers, HCPs and industry, both within Europe and beyond. The key outcomes of this project will include a new model of knowledge co-creation and an evidence-base surrounding the potential scale-up of DIYAPS solutions that will have profound implications for those living with chronic conditions, their families, as well as healthcare systems and European society as a whole.
Original text from CORDIS.
Participants
- UNIVERSITY COLLEGE DUBLIN, NATIONAL UNIVERSITY OF IRELAND, DUBLIN · DublinCoordinatorIreland
- BOARD OF TRUSTEES OF THE LELAND STANFORD JUNIOR UNIVERSITY · STANFORDUnited States
- CHARITE - UNIVERSITAETSMEDIZIN BERLIN · BerlinGermany
- DCB RESEARCH AG · BernSwitzerland
- DEDOC LABS GMBH · BerlinGermany
- DIABETES VICTORIA · MelbourneAustralia
- FEDERATION INTERNATIONALE DU DIABETE REGION EUROPE AISBL · Bruxelles / BrusselBelgium
- KING'S COLLEGE LONDON · LondonUnited Kingdom
- KOBENHAVNS UNIVERSITET · KOBENHAVNDenmark
- REGION HOVEDSTADEN · HillerodDenmark
- T1INTERNATIONAL · CheltenhamCity levelUnited Kingdom
Links
Data: CORDIS, © European Union