Clinical trials can be slow and expensive and they may not address the real-life needs of patients managing complex conditions. At the same time, patients – especially with rare or chronic diseases – are often better experts at managing their disease, improving their quality of life and well-being, than medical professionals, due to their immediate experience and the impact on their lives. As a consequence of this, there is increasing interest to tap into this tacit knowledge and formalize it through patient-led research,
Our CRI Research fellows Marc Santolini and Bastian Greshake Tzovaras have been awarded a Collective Intelligence Grant by NESTA foundation to investigate how to make it easier for patients to do research together on the questions that matter most to them. Through a collaboration of two open research platforms they are developing, namely Just One Giant Lab and Open Humans, they will explore how matchmaking algorithms enable patients to find others in their community with the skills and interests to work together on shared research ideas - exploring, analysing and donating their data to answer important questions.
In particular, their goal will be to evaluate how notifications can trigger an increase in self-organization through preferential engagement based on needs that match either the recipient’s a) skills, b) physical location or c) interests. The lessons learned from the particular cases of patient-led research will be applicable for citizen science projects in general and help to facilitate them more effectively. And as notifications are used by a wide variety of social platforms to drive engagement and connect people, a better understanding of how these notifications affect self-organization can inform the further development of such online tools, in particular in the context of collaborative knowledge production.
You can keep track of the progress of this project here.