From BITS to BETTER – Workshop on meaningful patient involvement in developing digital endpoints in research and disease management
IDEA-FAST and several prominent large IMI (now IHI) projects are working on digital endpoints or digital biomarkers which can supplement or even replace traditional measurements to monitor the effects of treatment regimens and can timely assess improvement or progress of disease. Patient involvement is taken very seriously; these projects have interacted with representatives of patient organisations in developing the protocols, have done studies on participant experiences or have measured participant satisfaction.
What can we learn from those experiences? Are the present experiences representative for the much larger group of patients that may stand to benefit from these devices? Some of them lack digital skills, or may live in a suboptimal digital environment, which raises questions such as: how inclusive are we with the present approach? How can such endpoints and accompanying technologies play a role in supporting a plurality of values and address existing (digital) health literacy, skills and inclusiveness gaps?
- Sara Casati – bioethicist, BBMRI-ERIC
- Nebo Savic – anthropologist, Lygature
- Cate Titterton – PSAB member, IDEA-FAST
- Caroline Geelen – METC member
- Nikul Bakshi – Research Involvement Manager, Parkinson’s UK
- Fai Ng – Professor of Rheumatology, Newcastle University
- Christiaan van Swol – medical physicist, St. Antonius Hospital
- Jurriaan van Rijswijk – founding chairman of Games for Health Europe
Moderator: Irene Schluender – TMF
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