North West Londoners have clear expectations on how their health data should be accessed for research.

Discover-NOW, Health Data Research Hub for Real World Evidence, one of the UK’s eight Health Data Research Hubs, has today published findings from its first Citizen Advisory Group (CAG). This Group been formed as part of the Hub’s commitment to engaging patients and the public in a meaningful and authentic way to ensure trusted use of data as part of the recommendations from OneLondon’s Citizen Summit on ‘Public deliberation in the use of health and care data’.

The group of 40 citizens, recruited to reflect the North West London population, will continue to meet over the next year in a set of mini-deliberations to explore, discuss and deliberate key dilemmas facing Discover-NOW and to help inform its next steps.

The first of these deliberations, took place virtually in March over two workshops focused on what controls should be in place for non-NHS partners such as universities, commercial organisations and charities to have access to health and care data in a Trusted Research Environment (TRE). The group heard from experts, reviewed case studies and then deliberated their trades off to access controls and criteria. This resulted in a clear set of recommendations being presented back to Discover-NOW.

A citizen partner of Discover-NOW, John Norton, who was part of the CAG steering group design reflected:

“It has been truly impressive to witness such a broad range of views from such a diverse group, really getting under the skin and grappling with these complex issues. It demonstrates the power and effectiveness of informed conversation to explore people’s expectations and to involve them in genuine decision-making.”

The recommendations from this first deliberation are already having direct influence on the work of Discover-NOW as it ensures the Hub policies align to the expectations set out by the CAG. This includes:

Refining the criteria for data access requests to ensure that data access requests reflect what is important to the public.
Reviewing the membership of the NWL region’s existing data access committee to ensure it reflects the recommendations of the CAG.
Steering the development of its new Trusted Research Environment and how this can be potentially safely linked with other datasets.

Amanda Lucas, Operations Director, Discover-NOW Health Data Research Hub for Real World Evidence said:

“The levels of engagement, discussion and deliberation shown by the Group were exceptional and have led to some very helpful recommendations for the Discover-NOW Hub. This is a huge step forward in influencing and shaping how non-NHS organisations will access depersonalised data in a trustworthy and safe way. We are now working hard to implement and share these findings across our networks in North West London and beyond.”

Read the report in full