Towards a Research Agenda for Personal Data Spaces: Synthesis of a Community Driven Process

Abstract

Data are increasingly underpinning important actions and processes in both governmental and non-governmental environments. However, the consolidation of data in silo’s limits its ability to be reused while also restricting the control that people have over how their data is used. To mitigate these issues, decentralised storage and personal data store technologies have been put forward as an alternative. Such technologies have gained momentum in Flanders (Flanders is the northern part of Belgium) and became a key policy aspect and a driver for innovation. To support the adoption of these technologies, the Flemish government initiated ‘Solid Community’, a platform for academia, governments, citizens and industry to collaborate on the development of Solid, a technology specification for decentralised data storage. Through ten plenary sessions, the potential challenges that relate to the adoption of Solid were discussed within Solid Community. The reports of these sessions were analysed through qualitative content analysis, leading to the identification of four domains in which these challenges can be situated: social, technical, legal and network (ecosystem) challenges. This paper discusses these challenges and contributes to the development of an interdisciplinary research agenda to help shape the framework conditions for the further diffusion of socially robust, ethically justified and legally supported personal data space initiatives in Flanders.

Personal data store ecosystems in health and social care

“…To establish the necessary infrastructure, there needs to be focus on “whole systems” ( 30 ) as well as how to incentivize [e.g., ( 44 )] support and participation from a wide range of stakeholders. However, efforts are being made to move toward such infrastructure, e.g., with the proposed development of the European Health Data Space as well as the focus on smart data initiatives ( 28 ) and deployment of personal data stores in other domains [e.g., ( 43 )].…”

Making Sense of Solid for Data Governance and GDPR

“…Notably, the Flemish government in Belgium has embarked on an abitious project whereby all citizens will be provided a Solid Pod for the storage and control over their government-issued documents, and where apps can request access to this data based on the user's consent only after establishing legal agreements with the government-established Data Utility Company outlining permitted purposes and processing [12,13]. An earlier article from involved researchers outlines further similar use-cases for citizens [14,15].…”

“…They are not exhaustive, since there can always be new paradigms and methods that change how implementations are deployed and/or function. For relevance, see prior descriptions [12][13][14][15]24] and explorations of legal relevance [6,26,37]. Instead, the categorisation of use-cases focuses on the aims of this article, which are: (1) to identify data governance patterns involving Solid Pods; (2) express use-cases in terms of freedoms and limitations on abilities and actors; (3) to explore issues of trust and security that arise from specific governance patterns; (4) to explore variations in responsibilities and accountability; and (5) to guide how legal compliance investigations should approach the use of Solid .…”

“…The SaaS paradigm also enables capabilities such as integrating Solid specifications on top of existing products and services, such as that offered by NextCloud 13 , by using Solid as a thin-layer of APIs on top of the underlying native solutions. This approach can also be extended beyond SaaS to provide the resulting solution as PaaS or IaaS offerings.…”

Você decide quem POD: empoderando a/o estudante de computação quanto à propriedade de seus dados

“…O projeto Solid 1 , liderado por Berners-Lee e empreendido também no MIT 2 , surge oficialmente em 2016 com uma proposta de re-desenho da Web objetivando devolver a cada usuária/o o controle sobre seus próprios dados [14]. Desde então, várias iniciativas envolvendo tanto organizações governamentais e não-governamentais, quanto academia, em aplicações de comunicação e entretenimento [18], saúde [8,10], educação [15] e governo eletrônico [22] vêm se fazendo registrar na literatura.…”