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Londoners centre stage of plans to join up the Capital’s health and care information

One hundred Londoners representative of the Capital’s diverse population are today meeting in the latest workshop about joining up health and care information to improve health outcomes across London (1 July 2023).

OneLondon’s Citizens’ Advisory Group was first brought together last month for two days of discussions about joining up health and care information in the Capital. Today’s workshop will see the Group finalise a set of recommendations that will help inform the work of the London Health Data Strategy that aims to use the power of data at scale to drive improvements in health and care for Londoners.

Public involvement has always been at the heart of OneLondon’s work and this Citizens’ Advisory Group builds on ongoing engagement with Londoners that began in 2020 with the OneLondon Citizen Summit – the world’s largest public deliberation in the use of health and care data.

The Summit resulted in a set of recommendations for local and national leaders, politicians and policymakers and has already helped support work across London to safely and securely join-up of health and care information.

This included recommendations for the London Care Record, a single and secure view of a person’s health and care information, which helps ensure frontline professionals have the information they need when they need it to provide faster, safer and more effective care.

Today’s workshop focuses on using health and care data to support planning and research – including developing a Secure Data Environment in London which will use data to improve research capabilities in the Capital. There are enormous potential benefits in terms of improved health outcomes in doing this, but in order to build and maintain public trust and confidence it is vital that this is done in a way that Londoners find acceptable.

During June’s workshops the Citizens’ Advisory Group discussed a range of options in relation to London’s SDE’s development. Today’s session will focus on using these insights to shape and produce a series of recommendations which will then inform the London Health Data Strategy moving forwards.

Luke Readman, Director of Digital Transformation NHS England (London Region), said:

“Instead of making assumptions about where people are coming from we want to understand what people really think. That’s why involving Londoners in our work is absolutely key and I am proud of OneLondon’s track record in doing this. I would like to thank everyone involved in this Citizens’ Advisory Group for the energetic and productive discussions. This will help shape our work for years to come as we join up information to make improvements to health and care across the Capital. I look forward to further discussions over the months ahead.”

Deborah Millington, Citizen Representative for the London Health Data Strategy Programme,  said:

“As one of the Londoners involved in the first Citizen Summit I was delighted to also be involved in this Citizens’ Advisory Group. It is vital that this important programme continues to be shaped and informed by views of London citizens and that London governs and safeguards citizens’ healthcare data in a transparent and responsible way. Given the importance OneLondon attaches to involving the public in the development of its work I am confident this will be the case.”

Summary of OneLondon’s Citizen Engagement

2020 Citizen Summit

The OneLondon Citizens’ Summit took place in 2020 and brought together 100 Londoners, reflective of the Capital’s diverse population, to debate and deliberate some of the complex issues around uses of health and care data. The Summit identified Londoners’ expectations as to how their health and care data should be used, who should have access to it, and for what purpose. These expectations were delivered as recommendations to a panel of local and national system leaders, politicians and policymakers and continue to shape the work of OneLondon today.

2022 Public Deliberations

The London Health Data Strategy (LHDS) Programme aims to use the power of data at scale to drive improvements in health and care for Londoners. An initiative by the NHS in London, it is supported by the region’s five Integrated Care Systems, Academic Health Science Networks, Academic Health Science Centres and OneLondon.

In 2022 LHDS held a public deliberation with Londoners to inform its work. It was convened in order to ask Londoners’ how the programme should move forwards – keeping locally controlled approaches, moving towards a more pan-London approach, or a combination of these approaches. It resulted in a set of recommendations.

The London Health Data Strategy also has three Citizen Representatives appointed to the programme’s Stakeholder Board.

2023 OneLondon Citizen Advisory Group

The Citizens Advisory Group comprises 100 Londoners reflective of the Capital’s diverse population. The initial focus of the first workshops taking place 10/11 June and 1 July 2023 will be on research and development as part London’s successful application to create a Secure Data Environment (SDE) which will use data to improve research capabilities in the capital and health outcomes for Londoners.

The Citizen Advisory Group was asked to debate and deliberate a range of options, including who should be able to access the SDE, what safeguards should be in place and how much they should be charged to ensure NHS costs are covered and London benefits from any innovations that result. They will then produce a series of recommendations that will then inform the London Health Data Strategy and development of the SDE moving forwards. The recommendations will be published in due course.

Members of the Citizen Advisory Group will continue this important work over the next few years with further discussions about how health and care data is used.

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