Crowdsourcing for Health
Crowdsourcing for Health: Scientists and Patients Reconfiguring Trials and Regulatory Practices
Seed funded by the Wellcome Trust
Dr Annamaria Carusi, Medical Humanities, University of Sheffield.
Dr Giovanni De Grandis, Dept of Philosophy, Norwegian University of Science and
Clemens Wittwehr, Systems Toxicology Unit of the European Commission’s Joint Research Centre’s Institute for Health and Consumer Protection (IHCP).
Crowdsourcing is reshaping key gatekeeping mechanisms in healthcare such as regulatory tests and clinical trials. This project will compare the science and patient communities in order to identify the main opportunities and challenges for healthcare of this redistribution of knowledge for healthcare. The project focuses on the inter-relationship between epistemic, social, pragmatic and ethical drivers in four main areas:
1. distribution and assessment of information and knowledge,
2. integrity and robustness of research,
3. ethical questions raised by the allocation of responsibility and the management of risk,
4. social acceptance and adoption of new modes of knowledge gatekeeping by scientists and patients.
The main activities of the project are 1) to conduct comparative pilot studies of an emerging science community crowdsourcing information and knowledge for regulatory tests for drug assessment, and of patient communities that have produced patient-led clinical trials and similar initiatives that inform patient choices and apply pressure on healthcare providers; 2) to build an interdisciplinary and international community of researchers who will be in a position to collaborate on key questions and challenges in crowdsourcing for health, and inform the ongoing development of these resources.