We are pleased to announce that Fondation Botnar has commissioned IT for Change to develop a framework focusing on ‘Health Data as Global Public Good' that centrally includes community ownership of data into it. The research for this project will lay out the nature, role and governance of health data in the emerging digital society and economy. The project aims develop an understanding of these issues and their dynamics among an audience of policy makers and practitioners.
The commissioned research will go beyond conceptions of personal health data to also look at data at group and community levels, and issues of its collective 'ownership' and governance. It will trace the historical context of how information and data has been treated in the health sector to bring out what are the continuities and discontinuities and novelties in the digital age. Some relevant technology issues will also be attended to.
Building on existing knowledge, the research will attempt a basic set of concepts and definitions for understanding and working in this area. It will also develop a (global) policy and governance model, including issues of 'ownership', of health data in the digital age. It will also analyze the possible of role the World Health Organization (WHO) in health data governance. Data as a public good and its community ownership will be key ideas involved.
Watch this space for more.