Where Is All Our Health Data Going?

Multiple initiatives going on in India regarding the collection of digital personal health data are analysed, and the question of how the data is being used is examined. While such data could facilitate healthcare and referral services, a strong and sensitive governance structure is needed to be in place to enable its optimal use and to ensure that the data is not used to further the agendas of surveillance and control.

Contemporary times are characterised by discourses around “big data” and how these can be mined to extract value. The rapid proliferation of new information and communication technologies (ICTs) are making it possible to collect, store, combine, and share large volumes of data at almost real time levels of speed. We are at an early stage of this “data revolution” and as citizens whose personal data is at stake, it becomes important to understand how this data is collected, by whom, for what purpose, and its implications. As Zuboff’s (2014) digital declaration states:

When it comes to “big data” and the digital future, we are at the very beginning. Despite the rapid race of connection and the oceans of data it generates our societies have yet to determine how all this will be used, to what purpose, and who decides.