OneLondon advisory group finalises recommendations for health data use

The OneLondon Citizen Advisory Group has finalised a set of recommendations that will help inform the work of the London Health Data Strategy, following a workshop on 1 July.

The Citizen Advisory Group is formed of 100 Londoners that reflect the diverse population of the capital. It aims to help guide policy makers who are debating how health and care data is 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 up in June for two days of discussions about joining up health and care information in the capital and the London Data Health Strategy. The Strategy aims to use the power of data at scale in order to drive improvements in health and care for the region.

The finalised set of recommendations are for local and national leaders, politicians and policymakers. This includes the group’s recommendations for the London Care Record, a single view of a person’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. 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.”

OneLondon has always had public involvement at the very heart of its work. The Citizen’s Advisory Group builds on the OneLondon Citizen Summit, the world’s largest public deliberation in the use of health and care data that happened in 2020.

Three years ago, 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 most recent action focused on using health and care data to support planning and research. This includes developing a Secure Data Environment (SDE) in the capital which will use data to improve London’s research capabilities.

The group debated a range of options in relation to London’s SDE development, before using these insights to shape the series of recommendations.

Deborah Millington, citizen representative for the London Health Data Strategy Programme, said: “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.”

The Citizen Advisory Group will continue its vital work over the coming years with further discussions on how health and care data is used.