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Short abstract:

After more than ten years, it is still unclear how mature the field of health data cooperatives is. Our study might be the first independent study of health data cooperatives. Data coooperative models encounter specific day-to-day challenges, which must be addressed to prove them their viability.

Long abstract:

After more than ten years since the apparition of the first health data cooperatives, it is still unclear how mature the field is. We found no independent empirical research reporting on the experience of sector leaders, and could not read about the key day-to-day challenges and best practices. This is striking, given the prominence that the model has been given in public debates on the alternatives to extractive data governance models. Our study might be the first independent empirical study of health data cooperatives.

We scoped the field with a literature review, and conducted a case study of two leading initiatives in Europe: Salus.coop from Barcelona and Liverpool Civic Data Cooperative. We interviewed cooperative managers to discuss the state of the art. Building from our interest in infrastructure, organisation and epistemology intersections, we assumed that the processes, principles and templates stipulated by the data cooperative model must have specific consequences for the conduct of research that it exists to enable. If confirmed, we also wanted to know how data cooperatives are tackling emerging challenges, and what best practices can be identified.

We confirmed the existence of specific challenges, but also the lack of specific strategies to mitigating them. Some challenges are persistent, but have been neglected as other issues that are perceived as more urgent and fundamental are given priority. Until these issues are explicitly tackled with, the sector will not mature into a tested data governance alternative. To this day, health data cooperatives are still largely an unproven model.