Designing Data Coops for Women’s Health

Abstract

The existing model of data ownership (so-called Web 2.0) does not benefit individuals and communities, instead providing value to a handful of very powerful and large businesses. Data coops represent means to shift this paradigm and empower individuals to take greater control of their data and extract value from it. However, approaching coops from a purely financial perspective does not seem satisfactory. Additionally, monetary rewards do not seem to be sufficient to encourage users to join these institutions. In this paper, we attempted to present that instead of being driven solely by commercial ambitions and monetary rewards, those who attempt to create coops should place community and its needs at the heart of the coop. They must consider what values and benefits coops can bring to their members, what knowledge and insights can be derived from its data and how it will spur the growth and development of that particular community. In our case we have decided to use women as a community whose needs can be addressed by designing a data coop. We have started by consulting potential members and conducting interviews to understand this community and its challenges better. We identified multiple needs - for example, having symptoms and side effects libraries. We tried to address these needs by designing a data coop that would incorporate the right data requirements, user experience and provide analytics and insights back to the community members as well as to data buyers.