A new taskforce is to be set up in the UK to develop a framework for clear and transparent discussions with the public, patients and healthcare professionals about how patient data can be used to improve health.
The aim is to develop innovative approaches and tools to encourage more effective dialogue and communication. The taskforce will build on the work of the recently published Caldicott review into the use of patient data in research.
The review concluded that while information from health records has a huge potential to improve healthcare delivery and advance medical research, it is essential that people have confidence in the way their data is managed and assurance over how it will be used.
At the moment, there is very low awareness around how data can be used within the National Health Service. This uncertainty and confusion erodes trust.
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, Wellcome’s Head of Policy, will lead the taskforce, which is expected to start its work in the autumn.
“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,” said Jeremy Farrar, Director of the Wellcome Trust.
“We welcome [Caldicott’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,” Farrar said.