Crowdsourcing for Health

Crowdsourcing for Health: Scientists and Patients Reconfiguring Trials and Regulatory Practices

Seed funded by the Wellcome Trust

Principle Investigator
Dr Annamaria Carusi, Medical Humanities, University of Sheffield.

Research collaborators
Dr Giovanni De Grandis, Dept of Philosophy, Norwegian University of Science and
Technology.

Governmental-body collaborator
Clemens Wittwehr, Systems Toxicology Unit of the European Commission’s Joint Research Centre’s Institute for Health and Consumer Protection (IHCP).

Summary

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.

More about the project here.

Events

July 7-8

Kick-off Meeting with our partner in the “Crowdsourcing for Health” project and seminars – European Commission Joint Research Centre, Ispra, Italy

Seminars

“Ethical and political dimensions of personalised medicine”, Giovanni De Grandis

Personalised medicine emerged as the promise of a revolution in medicine triggered by genomics and molecular biology. Pharmacogenomics is often presented as the most realistic and successful area of personalised medicine, yet its achievements are far from uncontroversial. Even when successful, drugs targeting only subgroups of patients raise important questions of fairness, access to treatment and increasing costs.

“Validation and acceptance of models in computational biomedicine”, Annamaria Carusi.

The translation of computational modelling into biomedical and clinical domains demands different approaches to be taken to model validation. This talk reports on a cross-disciplinary workshop bringing together scientists and engineers, as well as social and philosophical perspectives on modelling, to identify the challenges are and ways of tackling them.

 

July 11

Invited project presentation at Charité  (The Department of Medicine at Freie Universität Berlin and the Medical Faculty at Humboldt-Universität zu Berlin).