Data for Public Benefit was published in April 2018 by Involve, Carnegie UK Trust and Understanding Patient Data. Its aim was to address the lack of a clear definition for the term public benefit, where it relates to sharing personal data between public service providers.

The report identified three tests to help assess whether public service providers have the social licence to share and use data more widely. Data sharing should be:

  • purposeful
  • proportionate
  • and responsible.

The report included a framework setting out questions public service providers can use to assess whether these tests have been met.

Equally important, the framework aimed to both provoke discussion amongst public service providers and help enable a meaningful dialogue with publics on the risks and public benefit of data sharing.  

Testing the framework

Involving the Public in Robust and Trustworthy Data Sharing reports on a workshop held in September 2018 by Involve and Carnegie UK Trust. Local and central government representatives came together to explore what value the Data for Public Benefit framework could bring to their settings and to think in more detail about how to engage the public on data sharing initiatives.

Five areas where the framework could act as a valuable tool were identified: identifying purpose, decision-making, partnership working, best practice and communications. Each of these is unpacked further in the report.

How might understanding public perspectives inform data sharing initiatives?

Throughout, participants were asked to keep in mind the value of bringing public perspectives into the development of data-sharing initiatives. Participants saw the value in engaging publics with data sharing. Questions prompted by discussing the framework included:

  • Could you run a process in which the public give scores against the framework in order to create an acceptability score?
  • How can engagement be sustainable and cost effective, whilst being meaningful, in light of the number of people in regions that may be considering data sharing initiatives?

Broader discussions around what attendees would like to ask the public about data sharing followed. These fit into four themes: Purpose, Acceptability, Implementation and Resourcing. Questions include:

  • What are the conditions under which data sharing becomes more acceptable?
  • How do the public understand risk/benefit of data sharing – and how should systems be set up to take account of this?
  • What level of transparency do the public need?

How to get publics involved

Three potential methods of public engagement were shared with the workshop group, citizens’ jury, citizen’s panel, and distributed dialogue. The discussion explored which methods might be appropriate for engaging publics on data sharing initiatives. Each method was considered to offer benefits, however tensions and trade-offs will need to be considered by local authorities when designing an engagement process.

A number of local authorities are now exploring next steps.

The report can be found here and further information about the workshop and report can be found in posts by Involve and Carnegie Trust UK.