SalusCoop (2017)

Salus Coop aims to legitimize citizens’ rights to control their own health records while facilitating data sharing to accelerate research innovation in healthcare.

At a glance:

Salus.coop is an initiative born out of a research project lead by Ideas for Change. The project explored the viability of a citizen-driven model of collaborative governance and management of health data.

To meet these goals, Ideas for Change conducted field and desk research. First, the state of existing health data sharing initiatives was reviewed and interviews with experts and practitioners were performed. These included health sector professionals, patient associations, researchers and experts in the field of data intensive technologies, among others. Second, the collected data was analyzed by using thematic analysis and key emergent themes were crafted. These themes were then further analyzed and discussed with a selected group of specialists in two validation sessions.

After the research project, some of the partners involved decided to continue the momentum by creating a cooperative that would enable citizens to share their health data with different institutions and research projects. The cooperative was funded in 2017 with 12 members. Currently the cooperative is working in establishing partnerships and collaboration agreements that can enable the first project.