Data solidarity: Operationalising public value through a digital tool
Seliem El-Sayed, Ilona Kickbusch, Barbara Prainsack
Abstract
Most data governance frameworks are designed to protect the individuals from whom data originates. However, the impacts of digital practices extend to a broader population and are embedded in significant power asymmetries within and across nations. Further, inequities in digital societies impact everyone, not just those directly involved. Addressing these challenges requires an approach which moves beyond individual data control and is grounded in the values of equity and a just contribution of benefits and risks from data use. Solidarity-based data governance (in short: data solidarity), suggests prioritising data uses over data type and proposes that data uses that generate public value should be actively facilitated, those that generate significant risks and harms should be prohibited or strictly regulated, and those that generate private benefits with little or no public value should be 'taxed' so that profits generated by corporate data users are reinvested in the public domain. In the context of global health data governance, the public value generated by data use is crucial. This contribution clarifies the meaning, importance, and potential of public value within data solidarity and outlines methods for its operationalisation through the PLUTO tool, specifically designed to assess the public value of data uses.