Participatory data stewardship

Well-managed data can support organisations, researchers, governments and corporations to conduct lifesaving health research, reduce environmental harms and produce societal value for individuals and communities. But these benefits are often overshadowed by harms, as current practices in data collection, storage, sharing and use have led to high-profile misuses of personal data, data breaches and sharing scandals.

These range from the backlash to Care.Data, to the response to Cambridge Analytica and Facebook’s collection and use of data for political advertising. These cumulative scandals have resulted in ‘tenuous’ public trust in data sharing, which entrenches public concern about data and impedes its use in the public interest. To reverse this trend, what is needed is increased legitimacy, and increased trustworthiness, of data and AI use.

This report proposes a ‘framework for participatory data stewardship’, which rejects practices of data collection, storage, sharing and use in ways that are opaque or seek to manipulate people, in favour of practices that empower people to help inform, shape and – in some instances – govern their own data.

As a critical component of good data governance, it proposes data stewardship as the responsible use, collection and management of data in a participatory and rights-preserving way, informed by values and engaging with questions of fairness.

Drawing extensively from Sherry Arnstein’s ‘ladder of citizen participation’4 and its more recent adaptation into a spectrum, this new framework is based on an analysis of over 100 case studies of different methods of participatory data stewardship. It demonstrates ways that people can gain increasing levels of control and agency over their data -  from being informed about what is happening to data about themselves, through to being empowered to take responsibility for exercising and actively managing decisions about data governance.

Throughout this report, we explore - using case studies and accompanying commentary - a range of mechanisms for achieving participatory decision-making around the design, development and use of data-driven systems and data-governance frameworks. This report provides evidence that involving people in the way data is used can support greater social and economic equity, and rebalance asymmetries of power.

It also highlights how examining different mechanisms of participatory data stewardship can help businesses, developers and policymakers to better understand which rights to enshrine, in order to contribute towards the increased legitimacy of – and public confidence in – the use of data and AI that works for people and society.

Focusing on participatory approaches to data stewardship, this report provides a complementary perspective to Ada’s joint publication with the AI Council, Exploring legal mechanisms for data stewardship, which explores three legal mechanisms that could help facilitate responsible data stewardship.

We do not propose participatory approaches as an alternative to legal and rights-based approaches, but rather as a set of complementary mechanisms to ensure public confidence and trust in appropriate uses of data, and – in some cases – to help shape the future of rights-based approaches, governance and regulation.