A deliberation on the National Data Opt-Out for Research and Planning in London (2022) 

During the London Health Data Strategy deliberation participants highlighted confusion, as well as a lack of awareness and transparency, around the National Data Opt-Out for Research and Planning, and how this applies in London. They expected the NHS in London to address this immediately, to educate and reassure the public about the use of their data. 

The National Data Opt-Out is a complex topic, informed by several different bodies of law. ‘Confidential patient information’ is largely defined by what is and isn’t identifiable. However, ‘identifiability’ isn’t well defined in the legislation. This leaves application of the National Data Opt-Out open to interpretation.  

The aim of this deliberation was to explore the application of the National Data Opt-Out for Research and Planning in London, recognising the different views around its interpretation. 32 participants were selected from the pool of 59 involved in the London Health Data Strategy deliberation. This meant that they had already been educated around the use of de-identified data in research and planning and had an awareness of the National Data Opt-Out.  

Over two three-hour workshops participants learnt about the National Data Opt-Out, London’s interpretation of its application, and challenges to this interpretation. Participants were given opportunity to ask questions, as well as to discuss the opt-out in the context of different attitudes towards data use (portrayed via fictional personas). These discussions helped draw-out participants’ priorities in relation to some of the key factors at play; the benefits of research and planning, privacy and tackling health inequalities.  

The second workshop – following six hours of deliberation – concluded with a vote on the extent to which participants (individually) agreed or disagreed with the London Health Data Strategy programme’s interpretation of the opt-out. The overall result was favourable towards London’s interpretation, but participants also recognised the huge learning journey they had been on in relation to the topic and highlighted the need for wider-reaching communication and education.