As part of our research into whether data trusts are a useful way of increasing access to data while retaining trust, we commissioned Communications Chambers and Involve to explore the decision-making process used in data trusts to decide how data may and may not be used
A data trust is an intermediary between data providers, data users and other stakeholders in the sharing and use of data. Its central task is to enable data providers and users confidently to share, access and use data, consistent with its purpose, while maintaining robust systems to identify and mitigate risk.
It is a form of data governance: through its decision-making processes, it makes authoritative determinations about how data may and may not be used. Data trusts may be most valuable when there are many data providers, many potential use cases, and different views about how data should be used. In that scenario, how the trust makes decisions is crucial to its legitimacy and consent.
The goal of this report is to provide guidance on how trusts might go about designing their decision-making processes – what factors to take into account and some of the options that may be available.