Fondation Botnar has commissioned IT for Change to develop a nuanced framework, focussing on ‘Health Data as Global Public Good' to centrally include community ownership of data into it. The working paper is expected to lay out the nature, role and governance of health data in the emerging digital society and economy. This is to be done in a manner that helps Fondation Botnar, but also possibly a wider audience of policy makers and practitioners, develop an understanding of the issues and dynamics involved.
The paper 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 paper 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. Alongside, it will analyse 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. It will be presented at the World Health Assembly in October 2020.
Watch this space for more.