Understanding Patient Data worked with Involve and Carnegie UK Trust to explore the tensions between the benefits and risks of data sharing.

About the research

It's important that the sharing of personal data between public service providers will benefit the public. However, the term ‘public benefit’ is rarely, if ever, clearly defined. This research published in April 2018, unpacks and explains the benefits and risks around data sharing. 

The report is based on the findings from a series of six workshops in different local authority areas across England. The workshops brought together over 120 professionals from the public and voluntary sectors (working in housing, criminal justice, health, social care and welfare) to explore how they understand, define and value the public benefits which could be derived from the use of personal data.

The findings

The findings are available in the report titled 'Data for Public Benefit: Balancing the risks and benefits of data sharing.'

Three tests emerged from our research for public service providers to gain the social licence to share and use data more widely. These are that data sharing should be:

  1. Purposeful
  2. Proportionate
  3. Responsible

The report presents a new framework for public service providers to assess whether these tests have been met. The framework aims to provoke discussions among public service providers and encourage them to engage the public in decisions about data sharing.