Information from health records has a huge potential to improve healthcare delivery and advance medical research. But it’s essential that people have confidence in the way their data is managed and assurance over how it will be used.
At the moment, there’s very low awareness around how data can be used within the NHS. This uncertainty and confusion erodes trust.
The new taskforce will build on the work of the Caldicott review, helping to develop a framework for clear and transparent discussions with the public, patients and healthcare professionals about how data can be used to improve health. It will develop innovative approaches and tools to encourage more effective dialogue and communication.
Jeremy Farrar, Director of Wellcome, said: "We will only unlock the immense value of patient data if we have open and honest discussions about how and why data can be used for care and research, what’s allowed and not allowed, and how personal information is safeguarded.
"We welcome Dame Fiona’s call for a full conversation with the public and are very pleased to announce that we are setting up a new independent taskforce to explore the most effective ways to have discussions about uses of data."
The taskforce will be hosted by Wellcome, with support from the Medical Research Council, the Economic and Social Research Council and UK Clinical Research Collaboration partners. Nicola Perrin, currently Wellcome’s Head of Policy, will lead the taskforce with a small team. The taskforce is expected to start in the autumn.
Earlier this year, we published research into public attitudes towards commercial organisations accessing health data.