The UK government publishes guidance today into how health and care data can be to benefit 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.
Based on a survey of 112 members of the public, 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.
The report found that “transparency cannot be separated from public benefit. It is not an add-on or nice to have. Public benefit can only be demonstrated if the value of using data is explained to society.”
It said to demonstrate public benefit, transparency is required throughout the whole data life cycle. This includes during collection, storage, assessment and use of data, not just at the point of an application or decision being made to use data.
“Public benefit is undermined if authentic public engagement is not integrated into decisions about use of data. This means engaging people from a cross-section of society in assessing how data is used,” it noted.
Participants backed the use of health and care data in research and innovation,” it said. “Public benefit can be achieved through using data for collaboration, exploratory research, and new developments, such as drugs, treatments and services.”
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It also stressed that “identifiable and sensitive data should be treated with the utmost care. If it is, it has the potential to bring public benefits.”
Additionally, it recommended that the benefits from the use of health and social care data must be fairly distributed, with protections against discrimination and unjustified geographic disparities.
Similarly, it advocated for safeguards to protect society from data manipulation, especially where data could be used to achieve political or financial ends.
“Public benefit must outweigh profit, with profitable uses of data rigorously scrutinised before data is used,” it said.
Research, planning and innovation
“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,” said the government in a statement.
A cross section of the original 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.