The OneLondon Local Health and Care Record Exemplar (LHCRE) has today published the output report and recommendations from the OneLondon Citizens’ Summit on uses of health and care data, held earlier this year.
The report – titled Public deliberation in the use of health and care data – provides unique insight and detailed recommendations as to how Londoners’ expect their health and care data to be used. Please find a copy attached.
Public deliberation in the use of health and care data follows the remarkable journey of the 100 people who took part in the OneLondon Citizens’ Summit held over two weekends in February and March 2020. These 100 Londoners – reflective of the city’s diverse population – came together from across all 32 boroughs, from different backgrounds and walks of life, and with contrasting attitudes, to discuss, debate and deliberate some of the complex issues as to how we – as a London health and care system – should be joining-up and using people’s data to support individual care, to plan public services, and to enable research.
Why is this report important?
- It sets out detailed recommendations and conditions, formed by citizens, as to how London’s health and care system should be using health and care data, including:
- Having a single set of policies for London to ensure consistency
- How personalised data is used by those working in health and social care to support individual care, including the safeguards and accountability that must be applied
- An expectation that de-personalised data must be used by relevant organisations to plan and improve services, with conditions to ensure security, transparency, and the personal choice of the individual
- Conditions for using de-personalised data to support research and development, including who should have access, how information should be safeguarded, and how benefits should be shared with the NHS
- How citizens should be involved in ongoing policy development and governance around the uses of health and care data
- It provides robust analysis of how recommendations were reached, enabling us to understand what is most important to people when considering the real-world expectations, issues and trade-offs associated with joining up health and care information
- For the first time, it provides clear instruction from the public to policymakers and system leaders as to how we should be using health and care data in a way that builds public trust and confidence. This also offers clarity and direction to frontline health and care staff and data controllers
- It demonstrates the effectiveness of deliberation in 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. Importantly, this highlights the ability of the public to grapple with complex issues and form practical, meaningful recommendations which can be used to shape policy
Where to find more information