Organisation: University of Twente
Position: Postdoctoral researcher
What should a citizen science for health platform look like? Experiences on the collaboration with patients to develop such a portal
Through living with and managing their symptoms on a daily basis, patients become experts on their own condition. Their expertise can help to guide the scientific process, as well as contribute to scientific knowledge. In order to facilitate collaboration between patients and researchers, and to collect data/create knowledge (ie citizen science), a good infrastructure is necessary.
Citizenlab researchers collaborated with patients and Sport Data Valley to shape this portal. Topics as data sharing, privacy and consent, functionalities and relevant research topics were discussed. In collaboration with the parties, we created a portal where patients can share personal health-related data and collaborate with researchers and other patients. The portal gives patients more insight in their condition, lets them compare themselves to other patients, and share potential research questions. For researchers, it provides insight into issues important to patients and an opportunity to collect real-world data from large groups of patients. This presentation describes the citizen science approach in the process of the development of the portal, from the initial talks with patients until the creation of the portal itself.
Lieke works as a postdoctoral researcher at the Biomedical Signals and Systems research group at the University of Twente, and is affiliated with the TOPFIT Citizenlab. She has a background in cognitive neuroscience and is interested in the collaboration between citizens and scientists and how the expertise of both groups can be combined.