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CAG 1 July

Public recommendations on using health data for research published

Recommendations from over one hundred Londoners, known as the OneLondon Citizens’ Advisory Group (CAG), about joining up data for research purposes to improve health outcomes across the Capital have been published today (18 March 2024).

This is part of the OneLondon Health Data Strategy (OLHDS) that aims to use the power of data at scale to drive improvements in health and care for Londoners and support a wider vision for London to become the healthiest global city, and the best in which to receive health and care services.

These recommendations are helping to inform the design of the new London Secure Data Environment, which has three key functions around using data for direct care, system planning and research and development. The CAG was specifically looking at the research and development part of this, which has been supported by funding from NHS England’s Data for Research and Development Programme.

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 CAG consists of 102 Londoners representative of the Capital’s diverse population and met over three days in summer 2023 in deliberative workshops about how they expect data to be used for research and development purposes, who can access it and the expectations they have around charging. They produced a series of recommendations to inform the development of our work moving forwards.

The CAG members said they continue to support joining up and using their data to improve the health outcomes across the Capital and beyond, including for research initiatives. They recommended an approach that prioritises benefits to public and data security including:  

  • Clear and demonstrable public benefit is the most important factor to consider when granting access to data – defined as how many people will benefit, if the outcome had the potential to be life-saving or life-changing and benefits for underserved communities.
  • They support a tiered pricing model and feel the type of organisation should determine the charge.
  • They feel projects with the potential to bring large benefit to the NHS and UK population should be prioritised.

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

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

“We have always been clear that in order to build public trust and confidence in our work to join up health and care data to better meet the needs of Londoners we must do this in partnership with Londoners. I would like to thank members of our Citizens’ Advisory Group for their clear instructions that they continue to support joining up data and that benefits to the public and data security should be at the heart of this work. These recommendations are already informing our work and I look forward to further discussions with the CAG this year.”

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

“I was fortunate to be one of 100 Londoners selected to participate in the original OneLondon Citizens’ Summit and in 2023 had the privilege of being invited back to the OneLondon Citizens’ Advisory Group’s inaugural deliberation. One of the most heartening aspects of my return was the realisation that the recommendations we put forward in the inaugural summit had been taken seriously and acted upon. It’s genuinely gratifying to see that the voices of ordinary citizens were not just acknowledged but also instrumental in shaping policy changes. These changes, driven by our collective wisdom, have helped ensure that the use of health and care data in London respects privacy, security, and the greater good.”

You can read a summary of the recommendations here and read the full report here. You can also hear more from Deborah Millington here.

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.

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.

2022 Public Deliberations

The OneLondon Health Data Strategy (OLHDS) 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 OLHDS 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 OLHDS also has three Citizen Representatives appointed to the programme’s Stakeholder Board.

2023 OneLondon Citizens’ Advisory Group

The Citizens’ Advisory Group comprises 102 Londoners reflective of the Capital’s diverse population. The initial focus of the first workshops that took place in summer 2023 was on research and development as part London’s successful application to create the London Secure Data Environment  to boost research capabilities in the capital and health outcomes for Londoners.

The Citizens’ Advisory Group was asked to debate and deliberate a range of options, including who should be able to access this, 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 produced a series of recommendations that are informing the OLHDS and development of it.

Members of the Citizens’ 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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