Clinical trials can be slow and costly, and fail to address the real needs of patients with complex diseases. At the same time, patients - particularly those with rare or chronic diseases - are often better experts in managing their disease, improving their quality of life and well-being than healthcare professionals, due to their immediate experience and impact on their lives. As a result, there is growing interest in harnessing this tacit knowledge and formalizing it through patient-led research,
Our researchers Marc Santolini and Bastian Greshake Tzovaras have been awarded a collective intelligence exchange the foundationNESTA to explore how to make it easier for patients to research together the issues that matter most to them. Thanks to the 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 common research ideas - exploring, analyzing and donating their data to answer important questions.
In particular, their aim will be to assess how notifications can trigger an increase in self-organization through preferential engagement based on needs that match a) the recipient's skills, b) physical location or c) interests. Lessons learned from the specific cases of patient-led research will be applicable to citizen science projects in general, helping to facilitate them more effectively. And as notifications are used by a wide variety of social platforms to stimulate engagement and connect people, a better understanding of how these notifications affect self-organization can inform the future development of these online tools, particularly in the context of collaborative knowledge production.
You can follow the progress of this project here.
