People with rheumatoid arthritis know what it is like to live with this condition. This knowledge from experience is very valuable in research and we want to use it within the TOPFIT Citizenlab. Over the past period, we have asked patients with rheumatoid arthritis how patients and researchers can best collaborate.

The idea of a website on which patients and researchers can work together was very well received. On such a website, patients can, for example, submit research ideas or participate in research. They can submit data about themselves, in order to gain insight for themselves, but also for science. The website offers a safe environment to share data and to collaborate.

This website, called Share Data Valley, is currently being developed. We are using the Sport Data Valley platform for this purpose.

As researchers, we went through the whole process of designing a citizen science website together with people with arthritis. Would you like to know more about how this went? Read the documents below or watch the short movie!

The detailed results of the interviews and the questionnaire about the initial ideas for the citizen science website can be found here.

The detailed results of the group discussions and the evaluation sessions on the design of the website can be found here.

The detailed results of the conversations about Share Data Valley can be found here.

This short video explains the concept of the website.