Open Science and the Organization of Drug Research Through Community Engagement

• In Event: 334 - Section on Medical Sociology Paper Session. Patient, Stakeholder, and Community Engagement in Health Research

Abstract

This paper reports on an in-depth, field-based study of how a major pharmacological research institute radically organized itself against the grain of dominant institutions and developed three inter-related research communities: its own open-science, participatory community; an international community of top researchers and funders that provided critical support and generative projects; and national communities of practitioners in each major specialty who helped design, recruit, and analyze non-profit clinical trials that set an international standard for scientific quality. Mario Negri trials often have 30-40 co-authors from the community of clinical volunteers who altruistically volunteer their time, as do their patients, for trials that test whether a new drug is clinically superior to ones in use. In costly commercial trials, biases can arise from the perverse incentives built into doing applied science for profit, paying clinicians to recruit, and paying patients or subjects to participate. The altruistic character of the Mario Negri Institute is evident in their seeking no gain beyond their science and patenting none of their discoveries, in their many outreach activities to patients and practitioners, and in taking unpopular stands against popular but unsafe drugs.

Authors

• Donald W. Light, Rowan University

• Antonio Francesco Maturo, Università di Bologna