Understanding Patient Data exists to support conversations about how health and care data is used, providing a range of resources to help people find out more. We are also involved in conversations about how to get the system right, including how to ensure patient data is used in a way that is fair, transparent and accountable. Developing the right system for how data about us is used as a whole, not just how patient data is used, will be essential to both ethical uses of data and to public confidence about how data is used.        

In June, the Department for Digital, Culture, Media and Sport (DCMS) launched a consultation on the Centre for Data Ethics and Innovation (CDEI). CDEI will advise government on ways to encourage ethical innovation in both data uses and new data-driven technologies. The consultation asked for feedback on appropriate roles for CDEI, how CDEI should run and what areas of work CDEI should tackle first.

Understanding Patient Data’s response was joint with Wellcome and can be found here. The key recommendations from our response are:

  • The creation of CDEI is a positive step. Its suggested roles and functions are good, but currently there is not enough emphasis on the need for CDEI to facilitate public discussion and debate on the many ethical issues around new data uses and data-driven technologies.
  • CDEI should imbed high-quality public dialogue work into its plan, bringing together people who influence decisions with people who might be impacted by them. Appropriately diverse and representative groups, who work to a clear purpose, can help CDEI ensure its advice is fair and equitable.      
  • CDEI must make its activities and recommendations available to the public. CDEI should demonstrate its authority by commenting publicly on both good and bad practice in data uses and data-driven technologies. This will help CDEI to evidence its trustworthiness to the public.
  • CDEI will need the resource to maintain ongoing engagement not just with the wider public but with the many stakeholders in this area, both across-government, cross-sectors, and at the UK and international level. CDEI will need to meet this challenge to fulfil its aims.  

The consultation closed on the 5th September and DCMS are now considering the submissions.