Today we are publishing the findings of a dialogue with more than 100 members of the public about how to make sure health and care data is used in ways that benefit people and society
Today we are publishing the findings of a dialogue with more than 100 members of the public about how to make sure health and care data is used in ways that benefit people and society.
The National Data Guardian (NDG) will use the insights to develop guidance to support people making decisions about access to data for research and innovation.
The report is part of the Putting Good into Practice project, which is co-funded by the National Data Guardian for Health and Care, Understanding Patient Data (UPD) and UK Research and Innovation’s Sciencewise programme.
Key findings of the report include:
Areas that matter most to dialogue participants:
Previous research has shown that ‘public benefit’ is the crucial condition for most members of the public to support the use of health and care data for purposes beyond their own individual care. However, what exactly is meant by public benefit is often not clear, so the NDG and UPD wanted to find out more, with a view to producing practical guidance that would help organisations evaluate public benefit. The guidance will encourage greater consistency for decisions about whether health and care data should be used for research, planning and innovation.
The public dialogue was designed and managed by deliberative engagement specialists Hopkins Van Mil and supported by Sciencewise. It involved 112 participants recruited in a 50-mile radius from four locations: Great Yarmouth, Stockport, Plymouth and Reading. Each participant attended five online dialogue events, with the opportunity to interact and discuss the topic with policymakers and specialists before coming to their own conclusions and recommendations. The dialogue was independently evaluated by 3KQ.
A cross section of the original dialogue participants will reconvene this summer as the NDG develops the new statutory guidance. Participants will discuss the draft guidance with data users, data custodians and policymakers to check it meets their expectations.