The National Data Guardian for Health and Care has launched a project to explore how people weigh up the benefits and disadvantages of sharing health and social care data for research.
Dame Fiona Caldicott said the move is aimed at improving the understanding of public attitudes towards an often sensitive area, and the findings will be used to develop guidance or advice for public benefit assessments to help data controllers decide whether it should be used beyond individual care.
It will involve a dialogue managed by research company Hopkins Van Mil under an oversight group which is currently being set up.
Caldicott said that planning for project began before the coronavirus outbreak, but that it will feed into the approach taken.
“We are already thinking about how the knowledge and attitudes of our public participants may have been affected,” she said. “We will work with our partners to consider this carefully in the design of the dialogue to acknowledge this and to ensure that resultant guidance remains relevant to a wide range of data sharing scenarios.”
She added that the questions to be asked will include which benefits count as ‘good enough’ to make the use of data acceptable, when data might benefit some groups but not others, and what if it benefits people other than those providing it?
The project will involve a series of public dialogue workshops to take place during the autumn and there are plans for a report to be published in spring of next year.
Image from GOV.UK, Open Government Licence v3.0
