Why was this work needed?
Health and care data offers huge potential to improve the health and wellbeing of the public, but it often raises questions and concerns amongst the public; it is important that local areas understand the views and experiences of its specific population. OneLondon felt that Londoner’s expectations about data sharing must be understood and responded to in order to create and sustain public confidence.
What happened?
In February and March 2020, OneLondon held a ‘citizens’ summit’ which brought together 100 Londoners from across all 32 boroughs, bringing different backgrounds and attitudes, to discuss, debate and deliberate how the London health and care system should be joining up and using data to support individual care, plan public services, and enable research. The intention was that the insights gained would contribute to the development of a single set of policies for joining up people’s health and care data in London in a way that is legitimate and continues to build trust and confidence.
What were the benefits?
The summit demonstrated the effectiveness of engaging the public in a genuine and informed conversation to explore people’s expectations and to involve them in decision-making in a way that builds confidence. It also demonstrated the ability of the public to grapple with complex issues and form practical, meaningful recommendations which can be used to shape policy.
Sometimes we can make assumptions or generalizations about what people’s priorities around data are, but public engagement allows us to verify or challenge this. For example, summit participants felt privacy was important, but it was still ultimately given less weight relative to the importance of patient safety and high-quality care that could be better achieved using data.
What type of data was involved?
Participants completed a pre- and post-project questionnaire which collected information about their knowledge and attitudes on the uses of health and care data. After listening to expert presentations, asking questions, having table discussions, and giving feedback, participants were allocated to working groups to discuss and form recommendations around the covered topics.
Who funded and collaborated on this work?
The deliberation was funded by OneLondon, and designed and delivered by Ipsos MORI and The King’s Fund, as well as an independent oversight group (including Natalie Banner, former Head of Understanding Patient Data).
Where can I go for more information?
OneLondon Citizens’ Summit website
Final report: Public deliberation in the use of health and care data
- Page updated: 12 December 2023
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