IDEA-Fast, Mobilise-D and Radar-AD are prominent large IMI (now IHI) projects 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. All these projects have taken patient involvement very seriously. The 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?
The face-to-face workshop will bring together patient representatives, researchers, ethical and legal scholars, physicians, and those involved in patient involvement and engagement in several IMI projects (IMI-IDEA-FAST, IMI-Mobilise-D, other projects involved in the IMI-NEURONET initiative such as RADAR-AD) as well as others involved and interested in the development of digital endpoints and accompanying mobile and residential technologies for chronic diseases. This multidisciplinary approach together with the focus on evaluating digital endpoints from the patient’s perspective makes the workshop unique.
