From BITS to BETTER – Workshop on meaningful patient involvement in developing digital endpoints in research and disease management
Beatrixgebouw (Jaarbeurs), Utrecht (NL), 22nd September 2023
12.30 – 17.00 o’clock
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?
The face-to-face workshop will bring together patient representatives, researchers, ethical and legal scholars, physicians, technical physicist and those involved in patient involvement in IDEA-FAST 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.
The workshop will consist of three rounds.
- The first round revolves around the question: “Who is the patient?”.
- In the second round, the focus is on the patient perspective.
- The third round looks at the research/practical perspective.
Sara Casati (bioethicist, BBMRI-ERIC)
Nebo Savic (anthropologist, Lygature)
Cate Titterton (Member of the Patient Specialist Advisory Board, IDEA-FAST)
Caroline Geelen (member of a Medical Research Ethics Committee)
Fai Ng (Professor of Rheumatology, Newcastle University, and project coordinator, IDEA-FAST)
Christiaan van Swol (medical physicist, St. Antonius Hospital)
Jurriaan van Rijswijk (founding chairman of Games for Health Europe)
You will receive a confirmation e-mail after registering. Please check your junk e-mail folder if you do not receive the confirmation. We are looking forward to welcoming you in Utrecht!