We are a citizen data cooperative that accelerates research and innovation in the healthcare sector.

Salus.Coop is a citizen data cooperative for non-profit health research founded in Barcelona by a group of citizens in September 2017.

With the support of Mobile World Capital and Ideas for Change and based on citizens’ preferences, it has designed the“Salus Common Good”license that allows the donation of data for research based on five conditions: (i) use for health research (ii) by non-profit institutions (iii) that openly share the results of their research (iv) by anonymizing the data in the maximum possible level (v) until the donor citizen withdraws the permit.

COVID-19 has shown all citizens the need to use collective data first for the control of the epidemic and soon for the management of the progressive deconfinement process. The relevant data for the achievement of these objectives include personal statements of the state of health, results of analysis and clinical tests and mobility data, among many others.

The state of alarm gives those responsible for the health system a right not conditional on the collection of citizens’ data, which is already exercised in the clinical and mobility fields.

Without discussing this inherent right to the state of alarm, from Salus.Coop we understand that:

  1. The data voluntarily provided by citizens can complement and facilitate the interpretation of those obtained under the protection of the law.
  2. Citizens have the right to know under what conditions the data will be used, for what uses, by which institutions, for how long and with what level of anonymization.
  3. Citizens have the right to know the results of the studies carried out with the use of their data openly and at no cost.
  4. The technological architecture developed should allow each citizen to know and manage the own data that have been obtained under the protection of the law.

For this reason, we invite the health authorities, to whom we offer our selfless collaboration, to develop licenses of use and technological architectures that encourage citizen participation in the voluntary donation of complementary data, limit the abuses in the use and temporary extension of data obtained in a state of alarm, and achieve citizen complicity for the donation of data for research.