Enabling data sharing for social benefit through data trusts

A review of global knowledge, attitudes, and practices related to data trusts

By The Data Economy Lab

August 9th, 2021

Note: The interim draft of Enabling data sharing for social benefit through data trusts: Global survey is currently open for public consultation from the 13 November until 8 December.

All feedback, questions, and comments are appreciated – to feedback on the interim report, please leave a comment on this draft document.

For more information, please check out the blogpost below and for any further queries, please get in touch at [email protected].

Stewarding data is the foundational activity in the lifecycle of data –collecting, maintaining, and sharing it. It involves making important decisions about who has access to it, for what purposes, and to whose benefit. How data is stewarded ultimately affects what types of products, services, and insights it can be used to create, what decisions it can inform and which activities it can support.

In recent years, we’ve seen experimentation around new approaches to data stewardship to rebalance the power between people and corporations in the data economy. These approaches are designed to empower individuals and communities -usually, those who have generated the data or whom the data is about – to play a more active role in deciding how it’s used. These participatory approaches to data governance addresses have enabled new initiatives focused on tackling some of society’s biggest challenges. For example, Open Humans enables people to explore, analyse and share data about their health, and make it available for citizen science projects, and Driver’s Seat helps gig economy drivers to pool data about them to understand and optimize their working hours.

It’s in this context that the Aapti Institute and the Open Data Institute, supported by the Global Partnership for AI, have begun a new project to explore the global state of ‘data trusts’.

The Global Partnership for AI defines data trusts as “a form of data stewardship that supports data producers to pool their data (or data rights) to collectively negotiate terms of use with potential data users, through the oversight by independent trustees, with fiduciary duties, and within a framework of technical, legal and policy interventions that facilitate data use and provide strong safeguards against misuse.”.

Working to this interpretation, we will inquire into knowledge (awareness and understanding of data trusts), attitudes (perspectives on data trusts), and practices (implementation of data trusts) around the world. Our goal is to create a valuable reference point on the subject of data trusts for practitioners in the field, organisations advocating for responsible data stewardship, and policymakers, funders, and other enabling actors.

Over the next six months Aapti and the ODI will:

  • Undertake a review of relevant literature to document and bring together current perspectives around data trusts. This will build on the work of people such as Sylvie Delacroix and Neil Lawrence, Anouk Ruhaak, Sean McDonald, and Jasmine McNealy, and from organisations such as the Mozilla Data Futures Lab, the Ada Lovelace Institute, Element AI, and Nesta.
  • Run a survey to understand how that practicing data stewardship engages with the idea of data trusts, to move the conversation forward from the conceptual to the actionable. We intend to reach those seeking to create or already operating data trusts, and similar initiatives, as well as organisations that are working on the topic of data stewardship and have a good vantage of these efforts in their particular nations or regions.
  • Produce a report to share our findings, describing an international perspective on data trusts and their current practice. We will also share our broader reflections on the progress of data trusts to date, opportunities for their further development and practice, and action required to make it possible.

We’re committed to seeking and involving perspectives from Low and Middle-Income Countries in this work. The Aapti team is already deeply engaged with and has a breadth of knowledge on the data stewardship landscape in South Asia, and to widen the UK perspective of its work on data institutions, the ODI is working with the World Bank to explore the role they play in Low and Middle-Income Countries. We’re hoping that together, and along with the Global Partnership for AI, we can reach and support the participation of a broad range of stakeholders from different parts of the world in this project.

If you are working on the topic of data trusts and would like to get involved in this work, then please get in touch at [email protected]. We’re especially interested in resources to consider in our literature review or organisations we should include as part of our survey.

If you are interested in informing our study of data trust, we are looking for a geographically diverse set of people to respond to our survey. In particular, we’d like to hear from those who are building or running a data trust (or a similar initiative), or those working on the topic from an academic, theoretical, or advocacy perspective. If you fall into either of these groups, we would appreciate it if you took some time to fill out our survey.

In tandem with this work, the Aapti team is also working on a legal landscape for data trusts, supported by GPAI.