Sharing data altruistically on digital platforms in the health sector or in research-related environments is seen as contributing to the common good, according to a new report by the Esade Institute for Social Innovation entitled My Data, My Rules: From data extractivism to digital empowerment. The study focuses on digital empowerment and forms part of the RecerCaixa programme, which is funded by “la Caixa” in collaboration with the Catalan Association of Public Universities. It analyses 13 case studies in which people have control over their personal data, with particular emphasis on the experiences of Digital Estonia, Cozy Cloud and MIDATA.coop.
The report – which marks the seventh edition of the Esade Institute for Social Innovation’s Antenna for Social Innovation – notes that in some cases, data sharing is encouraged under a monetisation scheme: individuals can share subsets of their data in exchange for money. However, other rewards were also observed, including data panels and access to new products and services, as well as altruism in health and research platforms.
Focus on citizens
The study shows that a large number of corporations and digital platforms collect personal data and store it in multiple locations across their own servers, without allowing the people in question to access the data. As a result of these practices, trust in large companies has been eroded and people are becoming more aware of what sorts of data they are willing to share, with whom and for what purposes.
The study also analyses various best practices, including the creation of citizen-centred platforms that aggregate individual data under the control of the corresponding owner. These platforms also emphasise the importance of people being able to participate in the processing of their data through consent and the need for people to give their consent when third parties participate in the data processing. In particular, the report noted that initiatives that make it easy for people to exercise the right to delete their data help to empower digital citizens. Some initiatives have co-created privacy policies with their users and have even incorporated users into their ethics committees to discuss what rules should apply.
“The report shows that citizen empowerment is a hot topic that sparks great interest in society as well as the business world,” explained Liliana Arroyo, researcher at the Esade Institute for Social Innovation and one of the authors of the study. “Digital awareness is an inevitable debate nowadays.” Arroyo’s co-authors are David Murillo, also a researcher at the Esade Institute for Social Innovation and a lecturer in the Department of Society, Politics, and Sustainability at Esade, and Obaid Amjad, a PhD student at Esade.
Examples of digital empowerment
The three cases analysed in the greatest detail present, from different perspectives, the best practices for empowerment in their respective fields. Digital Estonia, an electronic administration initiative, represents the public sector. Cozy Cloud, a French start-up offering storage solutions “with an interesting anti-GAFA (Google, Amazon, Facebook y Apple) proposal”, is an example of a private initiative. And finally, MIDATA.coop is a cooperative platform from Switzerland that enables people to control the reuse of their health data.
In addition to these examples, the report also analyses ten other initiatives engaged in a variety of public, private and activist interests: Blue Button US, CitizenMe, Digi.me, Meeco, MyData Global Network, Mydex CIC, Savvy.Coop, Sesam Key, SOLID and Tactical Technology Collective.
This communication was first published 17 October 2019 by ESADE.