15th April 2021
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Public want more transparency over health and care data
Consultation reveals public concern over how health data is used
"The notion of 'public benefit' is itself not clear. What counts? What is fair? What different factors need to be weighed up, and how, when deciding if a proposed data use counts as being for 'public benefit'?" Putting Good into Practice report
The Government has published the outcome of a public consultation exercise on how health and social care data should be used for the benefit of society.
The National Data Guardian (NDG) will use the feedback to develop guidance to support those 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.
Future Care Capital were among the organisations that oversaw the consultation exercise which was a series of events involving a total of 112 people from four separate locations in England
The findings indicate that the public expect more transparency over how health and care data are used and how decisions are made.
People are worried about the potential for data to be misused or manipulated to suit an agenda, and see transparency as a way of reducing the risk of this happening.
The Office of the National Data Guardian is using the report findings to develop statutory guidance.
The key messages from the report include:
- Public benefit can only be demonstrated if the value of using data is clearly explained to society
- To demonstrate public benefit, transparency is needed throughout the process
- It is important to engage people from a cross-section of society in assessing how data is used.
A copy of the report is available here
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