Data Trusts—New Tools for Sharing Personal Data for the Common Good

Medical science, and in particular epidemiology, cannot advance without the data provided by the thousands of people who volunteer to take part in scientific research. ISGlobal collaborates with Salus.coop, a citizen data cooperative working for the common good, to validate the results of the European CitieS-Health project on a massive scale nationwide.

[This text has been written by Javi Creus, founder and strategy director of Ideas for Change and Xavier Basagaña, Associate Research Professor at ISGlobal.]

We are all aware of the value of our personal data and of the risk we take when we share it with organisations interested only in the pursuit of their own objectives. 

Our data fuel our addiction to social networks, amplify the commercial pressure we are subjected to online and can even be used for social control under some political regimes; and this is apart from the potential abuses and crimes to which we unwittingly expose ourselves.

However, medical science, and in particular epidemiology, cannot advance without the data provided by the thousands of people who volunteer to take part in scientific research.

Every citizen has the right to govern and manage their data in their own interest and for the common good, protected by European and Spanish legislation

Data is the fuel that drives the 21st century

Data is the fuel that drives the 21st century. This fuel is produced by each one of us—the citizens—and every citizen has the right to govern and manage their data in their own interest and for the common good, protected by European and Spanish legislation.

In recent years, a new legal structure called a data trust has been developed to facilitate the exercise of these individual and collective rights because digital rights only have effect if tools exist that can guarantee them.

A data trust is a neutral and independent legal entity that acts as an intermediary and administers sensitive data in a secure and responsible way

A data trust is a neutral and independent legal entity that acts as an intermediary and administers sensitive data in a secure and responsible way. The principal objective of the data trust is to protect the rights and privacy of the people whose data is being managed. They do this by imposing rigorous security and privacy controls and by assigning clear responsibilities to the actors involved in managing the data.

New Initiative from the CitieS-Health project

Analysis of data from about 300 citizens by researchers in CitieS-Health, a citizen science project led by ISGlobal, showed that our cognitive ability decreases on days when the air quality is poor and improves with proximity to greenspace. These preliminary results have been published in scientific journals and reported in the mainstream media.

On July 19, CitieS-Health will launch a follow-up study to validate these results in a mass nationwide campaign. The aim of this research is to put pressure on decision makers to improve the living conditions in our cities. It will focus on the issue of rising temperatures and health.

In keeping with the project's philosophy of empowering citizens, the new study will count on the collaboration of Salus.coop, a citizen data cooperative working for the common good and one of the first data trusts in the world. The cooperative’s objective is to make it easier for citizens to manage their own data and to share it securely and anonymously with the research projects they choose. The technology developed by this non-profit organisation, founded in 2017 by a group of professionals in Barcelona, generates a personal data repository for each data donor so that they will always have access to and control of their own data.

The cooperative’s objective is to make it easier for citizens to manage their own data and to share it securely and anonymously with the research projects they choose

When an individual wants to share their data with a research project, the data is anonymised and passed directly from the repository to the researchers; the data that has been shared and the conditions of use that govern its use are recorded in the blockchain. The researchers undertake to make proper use of the data and to make the results of their research openly available to the public or to personally provide some form of compensation to each participant in the form of information or services, as appropriate.

Invitating all citizens to join CitieS-Health

We are extending an invitation to all citizens to join this project. If you wish to participate, the first thing you should do is download the free "Saluscoop" app from your app store and verify your identity. Once the app has verified that you are a real person, it will replace your identifying data with a code, thereby creating a personal data repository only accessible to you—the owner of the data— and anonymised.

Our personal data can help to advance science. Join us to improve our cities and our health!

When you choose to participate in the CitieS-Health project, the app will request permission to record your location and activity (steps) and will send you an entertaining short cognitive ability test over two seven-day periods. The resulting data, combined with data available on air quality and temperature recording in the cities, will allow the researchers to validate their preliminary results.

Our personal data can help to advance science. Join us to improve our cities and our health!