Data Benefits: Attitudes and aspirations of benefit recipients in Scotland towards data sharing

ObjectivesThe reuse of administrative data has the potential to transform public services. However, there remains limited evidence on the views of affected communities towards the sharing and linking of their data. Our research aimed to gather attitudes of one such group: those in receipt of benefits. MethodsWe ran seven deliberative focus groups at community centres in Edinburgh, speaking to 37 individuals in receipt of benefits. These focus groups discussed four data sharing scenarios that were co-produced with stakeholders from the public sector, academia and the third sector. Our four scenarios included three scenarios of data sharing for the administration of benefits (one of which currently happens), and one scenario based on sharing of Scottish social security data for academic research (i.e. for data linkage). These events were followed up by two community discussion events which were open to the general public. ResultsAll participants were familiar with the idea of ‘personal data’, and spoke about various kinds of data sharing that already happens with their data. While some expressed trust, most participants strongly distrusted agencies and their ability to keep the