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Short abstract:

This talk puts “data sovereignty” in conversation with ideas of “sovereignty” in grassroots autonomous health movements. By reviewing case studies of collective autonomy in health, I consider how researchers concerned with digital sovereignty can learn from small-scale health autonomy movements.

Long abstract:

This talk puts “data sovereignty” in conversation with the operationalization of “sovereignty” in grassroots autonomous health movements (Braine, 2020). Health data sovereignty often focuses on bodily and data autonomy at the level of the individual. However, this focus on individuals limits views of critical justice issues that surface when data is considered in context of community (Treré, 2022). Suggestions to address collective data controls, referred to here as data sovereignty (Hummel et al., 2018), range from large-scale data refusal or repurposing (Milan and Velden, 2016) to mechanisms like data stewardship and cooperatives (Mills, 2019). However, aside from the robust, culturally informed practices of indigenous data sovereignty (Claw et.al., 2018), there is still little agreement on how data sovereignty gets defined and practiced at a community level (Hummel et al., 2021). As a result, existing initiatives remain disconnected from the praxis required in spaces such as grassroots health justice movements. I argue that data sovereignty praxis must engage with the question of who forms a collective (and how) to assess which routes are available to promote collective sovereignty over health data. To make this case, I review case studies of collective organizing for health autonomy, like the Black Panthers’ free clinics (Nelson, 2013), and then present an analysis of websites from current autonomy-promoting health justice groups in Philadelphia. I demonstrate what can be learned about the forms of data sovereignty that are important to health activists and how researchers concerned with digital sovereignty can learn from small-scale health autonomy movements.