Triem (2018)

Online tool that leverages on collective intelligence to create licenses that would allow citizens to share their health data for medical research.

At a glance:

TRIEM is an initiative aimed at giving citizens a more active role in the decisions that concerns the use of their health data for research. TRIEM uses collective intelligence mechanisms to explore under what conditions would citizens be willing to share their data. The final aim is to co-design data licenses that would allow citizens to grant legal permission of the access and use of their health data for research.

To develop Triem, Salus Coop and Ideas for Change run a set of workshops that allowed us to explore what are the critical variables and what fears and risks citizens are willing to take to contribute to medical research projects. The identification and characterization of the critical variables allowed us to inform the development of the online tool which was released at the end of 2018.

The online tool gathered more than 1,000 responses in two weeks and the results are being used to co-design the data sharing licenses.

My contribution:

  • Support in the design and facilitation of the face-to-face workshops with citizens.
  • Analysis of the results of the workshops.
  • Support in the design of the online tool.

Organizations involved:

Salus Coop
Ideas for Change
D-LAB MWC Foundation
Universitat Oberta de Catalunya
Roca Junyent

Further information:

Access the survey: