OneLondon advisory group finalizes recommendations for health data use

One The London Citizens Advisory Group has finalized a set of recommendations following a workshop on 1 July that will help inform the work of the London Health Data Strategy.

The Citizens Advisory Group is made up of 100 Londoners who reflect the diverse population of the capital. It aims to help guide policy makers who are debating how health and care data should be used. In determining how data is to be used in a way that Londoners find acceptable, it helps to build and maintain public trust and confidence.

The group first met in June in the capital for two days of discussion on how to access health and care information and inclusion in the London Data Health Strategy. The strategy aims to harness the power of big data to drive improvements in health and care in the region.

The final set of recommendations is for local and national leaders, politicians and policy makers. This includes the group’s recommendations for the London Care Record, a view of an individual’s health and care information designed to support faster, safer and more effective care.

Luke Readman, director of digital transformation at NHS England (London region), said: “Instead of making assumptions about where people are coming from, we want to understand what people really think. It is therefore absolutely vital to involve Londoners in our work and I am proud of OneLondon’s track record in doing so.

“I want to thank everyone involved in this Citizens Advisory Group for the energetic and productive discussions. This will help shape our work in the years to come as we add information to improve health and care across the capital. I look forward to further discussions in the coming months.

There has always been public participation in the work of OneLondon. Citizen Advisory Group One is based on the London Citizen Summit, which was the world’s largest public consultation on the use of health and care data in 2020.

Three years ago, the summit identified the expectations of Londoners about how their health and care data should be used, who should have access and for what purposes.

The most recent action focuses on using health and care data to support planning and research. This includes developing a secure data environment (SDE) in the capital that will use data to improve London’s research capabilities.

The group debated a number of options regarding London’s SDE development, before using these insights to shape a series of recommendations.

Deborah Millington, Citizens Representative for the London Health Data Strategy Programme, said: “It is vital that this important program continues to be shaped and informed by the views of Londoners and that Londoners’ health care data is controlled and protected in a transparent and responsible way ..”

The Citizens Advisory Group will continue its important work over the coming years with further discussions on how health and care data are used.