Discover-NOW, the Health Data Research Hub for Real World Evidence, welcomes the impressive depth of insight into public expectations on the use of health and care data published today in Public deliberation in the use of health and care data.
As one of the UK’s seven Health Data Research Hubs, the findings from this large-scale public deliberation are of particular importance. Discover-NOW, working in partnership with NHS, academic, charitable and commercial organisations, provides access to a unique depersonalised linked data set in a safe, secure and trusted environment. Understanding how we provide this access in way that has the trust and confidence of the public is absolutely critical.
We are pleased to see that Londoners have a strong expectation that their health and care data is used for purposes such as research and development, provided a number of conditions are met.
The specificity of these conditions including expectations about who should access data and how, charging models and levels of transparency, provide a very clear steer that can now help to inform the commercial, governance and engagement policies and processes of not only our Hub but many other organisations working with health and care data.
It is reassuring that many of the policies in place to support data access through the Discover-NOW Hub are in line with the expectations set out by Londoners. However, we will now review the recommendations and supporting conditions, and ensure that all approaches and practices, current and future, reflect and embed the expectations made by participants through this deliberation.
The deliberative methodology has highlighted the ability of the public to grapple with complex issues and trade-offs, and form considered and informed recommendations rooted in the context of reality. This therefore creates added credibility to the expectations set out in the report.
Axel Heitmueller, Discover-NOW Hub Director and Managing Director of Imperial College Health Partners, said:
“Public trust and legitimacy are arguably the most important things when working with health and care data. I therefore commend the public deliberation undertaken by OneLondon which has moved us so much closer as a health and care system to developing policies that are trusted by the public and in line with their expectations. It provides Discover-NOW a continued legitimacy in our approach and clear expectations to inform all of elements of our work. Further it demonstrates it is possible to meaningfully involve the public in shaping policy and informing decision making. I hope these recommendations are welcomed, and adopted, far and wide.”
Barrie Newton, Citizen Partner of Discover-NOW, said:
“As a London citizen it is refreshing to see an innovative approach to engaging such a diverse group Londoners from across all boroughs, different walks of life and with different attitudes and perspectives. It demonstrates the power and effectiveness of informed conversation to explore people’s expectations and to involve them in genuine decision-making.”
Adam Higgins, Global Director, AstraZeneca, who took part in the deliberation as an expert advisor said:
“I was impressed by the openness of the discussions in the public deliberation. It is vital that we clearly understand the expectations of the public when working with the NHS to realise the benefits that health and care data can bring. It is reassuring to read that the public are supportive of the NHS partnering with industry to find healthcare solutions that are focused on improved patient outcomes, driven by science and data. We support the efforts by OneLondon to ensure these partnerships are open and transparent and look forward to continuing to work with Discover-NOW and the NHS more broadly, to deliver on the recommendations made.”
Link to Public deliberation in the use of health and care data report: https://bit.ly/37k9Zsg
Link to OneLondon website: www.onelondon.online
