Strengthening and Opening Up Health Research by Sharing Our Raw Data

Abstract

> On November 30, 2011, a 2-hour conference, “Horizon 2020: Investing in the Common Good,” in the European Parliament in Brussels, Belgium, examined what it means to treat knowledge as a public good in policy making and how this should affect future European Union (EU) funding schemes for research and innovation. > The conference aimed at exploring how EU funding can promote economically and socially sustainable innovation models with the aim of more openness, easier accessibility, and higher result-oriented efficiency. The conference was related to Horizon 2020, which is the EU's framework program for research and innovation that was presented the same day. > The conference was organized with support from the Transatlantic Consumer Dialogue and Health Action International Europe. There were 3 presentations, followed by a response by the European Commission and an open discussion with the panelists, the commission, and people on the floor (a video of the meeting is available at http://www.greenmediabox.eu/archive/2011/11/30/horizon2020). > The first presenter, Professor Mariana Mazzucato (University of Sussex, UK), spoke about EU innovation policy in relation to risk taking and obtaining the return, and she challenged the common, but false, assumption that the public sector has a limited role in economic growth and innovation. The second presenter, technology writer Glyn Moody, focused on equitable licensing, open-source research, and access to scientific knowledge. I was the third speaker and focused on the moral obligation and societal benefits of providing free access to all anonymized raw patient data from clinical research. This article is an almost verbatim reproduction of my talk. Public investments in health research give a poor yield because there is too much ownership to the data and secrecy involved.1 Furthermore, what gets published, if made publicly available at all, is often a highly selective and misleading version of the true results. Although …