A human-centric approach to personal data
Birds-eye view on the journey towards a fair, sustainable and prosperous digital society
By Sille Sepp, Director of Operations at MyData Global
With the increasing datafication of everyday life, it’s natural to approach the question of data openness through the lens of privacy protection. After all, it’s essential to safeguard individuals’ rights to privacy and use personal data responsibly. However, we should avoid thinking that protection and use is an “either/or” choice. Instead, as the MyData community members have shown, it’s possible to open up personal data while keeping the data and individuals’ privacy safe.
Early perceptions of open personal data and evolution in thinking
“There is more personal data being collected now than ever before — energy use, health records, browsing habits. There is great potential for service users to make use of their own personal data sets. Many services already provide personal data download options /…/ But there are currently no industry standards or best practice[s]. /…/ How can we encourage and enable more service users to get copies of their personal data? What formats and licenses should apply? What are the potential benefits and risks? How does “open” personal data fit into the definition of open data as “non-personal” information?” These were the questions back in 2012 at the Open Knowledge Festival, where early pioneers started discussing the potential for a human-centric approach to personal data. A decade later — -how has the thinking and doing evolved?
Surely, there is more discussion about data and digital technologies than ever before. Catchy phrases like “data is the new oil” or “unlocking the value of your data” are commonplace in professional circles that signal a deeply engraved narrative and hopes for tapping into the potential of the data economy. However, we’ve also seen extractive and exploitative data practices reveal themselves (most notably summarised with what Shoshana Zuboff calls “surveillance capitalism”). Public scandals like Cambridge Analytica in 2016 or TikTok being fined in 2023 for illegally processing children’s data have contributed to a much higher awareness among “regular” people about privacy concerns and lack of individual agency in controlling data about oneself.
To combat imbalances of power in the data economy, several initiatives and projects have emerged over the last years to explore the potential of sharing and using data through trustworthy and fair mechanisms. This reflects an increased attention to collaborative business models, to fostering network effects and to designing data-based ecosystems. This increasing attention is driven by a broad recognition that data exists on a spectrum, where various modalities for sharing and using data can co-exist simultaneously. Further, it is now more generally understood and accepted that various stakeholders have specific roles regarding the data, with distinct rights and responsibilities (i.e. as data subjects, holders, producers and users). These insights have opened the possibility of leveraging the non-rival and non-excludable nature of data — several parties could make use of the same data without the other parties losing value because of it.
In the realm of personal data, this understanding has found its way to legislative measures, as seen in GDPR, granting legal rights to information, access, rectification, erasure, restriction of processing, data portability, objection, and protection against automated decision-making. These legally backed data rights uphold the fundamental idea that everyone should be free to use, build on or share personal data about themselves and determine who else can do so and under what conditions. Exercising these rights makes it possible to share data for better and more personalised services, and to safely donate data to contribute to research and the common good.
However, there’s a long way to go to make fair, sustainable and collaborative data ecosystems a reality. To build a human-centric alternative to the current data economy that privileges individual protection and empowerment over the data exploitation of Big Tech, we need human-centric and sustainable business models and governance mechanisms. Building them requires a multidisciplinary and collaborative approach that engages a vast network of stakeholders.
MyData — the human-centric approach to personal data
Since the early 2010s, a community of like-minded data professionals and organisations have championed the core idea that individuals should be in control of the data about themselves. After several years of dedicated conferences, they articulated their vision and principles through the MyData Declaration (endorsed today by 1500+ individuals and organisations) and established an international nonprofit organisation. Since then, this community has provided valuable insights and guidance for human-centric approaches to personal data, recognised by the EU’s Data Strategy.
While the MyData concept is based on democratic values and principles, it also promotes the untapped economic potential of personal data sharing. The human-centric paradigm aims at strengthening digital human rights while opening new opportunities for businesses to develop innovative services based on personal data, rooted in mutual trust. Businesses and public agencies view this as a strategic pivot in their approaches for data aggregation, processing and governance, promoting responsible and fair data sharing across organisations, individuals and communities to maximise the collective benefits of personal data.
To achieve this, the MyData Declaration describes three societal changes that need to happen. Firstly, despite the legal formalisation of individuals’ data rights in many parts of the world, exercising these rights remains complex. We need to simplify and streamline the process, reducing friction to action to make formal rights actionable. Secondly, safeguarding and controlling data alone won’t suffice if it doesn’t benefit individuals and societies. We must shift from solely preventing data abuse to deploying technologies and best practices that both protect and empower individuals with their data. Finally, to harness positive network effects in data sharing while upholding democratic values and freedom of choice, organisations must transition from closed to open ecosystems, allowing individuals’ data to flow freely, granted by meaningful and dynamic permissions from individuals.
Placing the individual at the centre of their data, businesses can start forming ecosystems with other institutions and vendors, to avoid duplication of efforts in collecting and storing data, while also accessing much broader datasets for improving their services towards their customers and constituents. Simultaneously, individuals would benefit from their data by receiving high-quality services, meaningful data-based insights to support their everyday lives as well as seamless experience when navigating between service providers. Building and maintaining this trustworthy relationship relies on the fundamental shifts described above as well as on the robust implementation of human-centric principles outlined in the MyData Declaration.
Moving towards a fair, sustainable and prosperous digital society is a continuous journey and requires active collaboration from diverse stakeholders. Support the MyData movement by signing the MyData Declaration and joining as a member. Initiate discussions and collaborations about the human-centric approach in your workplaces and communities, and discuss your insights with other members of the MyData community in the Slack workspace. We’re in this together!
For a more in-depth overview of human-centric data solutions, underlying infrastructures, governance mechanisms and business models, we recommend exploring the various MyData publications.
Sille Sepp is the Director of Operations at MyData Global. MyData is a human-centred approach to personal data management that combines industry need to data with digital human rights. The purpose is to empower individuals by improving digital human rights and the right to self-determination regarding personal data.
This article is part of our Finding the ‘Rights’ Balance blog series which was kickstarted by our Research Director, Renato Berrino Malaccorto. Part One discusses how access to public information and open data complement each other, while Part Two presents 7 ideas that harmonise debates surrounding open data and privacy.
