The dialogue, delivered in collaboration with Kohlrabi Consulting, involved participation from 44 members of the public from across the four nations of the UK, who took part in a series of online deliberative workshops.
Although participants were found to be supportive of the use of their sensitive data in research and reassured by security processes in place, they also felt there was currently a lack of proactive efforts by researchers and data custodians to share public information about how data is held, used and accessed for research. Participants also felt some of the processes for accessing data could be centralised and streamlined so that the public benefits of the research could be realised more quickly.
The scope of the dialogue covered all types of sensitive data, including data related not only to health but also to education, welfare, the environment and more. The dialogue report outlines six recommendations for the trustworthy use of sensitive data in research, based on the workshop discussions.
The DARE UK programme – which aims to design and deliver a more joined-up, efficient and trustworthy national data research infrastructure for sensitive data – is funded by UK Research and Innovation. The current and first Phase of the programme is led by HDR UK and ADR UK (Administrative Data Research UK).
Professor Andrew Morris, Director of Health Data Research UK (HDR UK), said:
“To fully realise the benefits of health data research at scale, we must create a data ecosystem that puts the public’s trust at its heart and invites them to contribute to it in a meaningful way.
“We’re pleased to see the recommendations from DARE UK’s public dialogue, and look forward to seeing them taken forward to deliver a trustworthy national data research infrastructure that supports research at scale for public good.”
DARE UK (Data and Analytics Research Environments UK) – Programme Updates
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