Understanding how to build a social licence for using novel linked datasets for planning and research in Kent, Surrey and Sussex: results of deliberative focus groups.

IntroductionDigital programmes in the newly created NHS integrated care boards (ICBs) United Kingdom mean that curation and linkage of anonymised patient data is underway many areas for first time. In Kent, Surrey Sussex (KSS), Southeast England, public health teams want to use these datasets answer strategic population questions, but expectations around are unknown. ObjectivesWe aimed engage with citizens KSS gather their views re-use, through deliberative discussions. MethodsWe held five 3-hour focus groups 79 KSS, presenting information about potential uses data, safeguards, mechanisms involvement governance decision making datasets. After each presentation, participants discussed facilitated small which were recorded, transcribed analysed thematically. ResultsThe generated 15 themes representing participants' on benefits, risks values safeguarding linked data. Participants largely supported improve service efficiency resource management, preventative services out hospital care, joined-up flows. Most expressed concerns accuracy, breaches hacking, worried commercial They suggested transparency usage audit trails clear accountability, ensuring re-use does not perpetuate stigma discrimination, ongoing, inclusive valued dataset decision-making, a commitment building trust, would meet responsible use. ConclusionsParticipants favourable proposed expected involvement. Findings mapped previous tenets social license can be used inform ICB digital programme how proceed trustworthy socially acceptable way.