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 Sciencewiseprogramme.
Key findings of the report include:
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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.
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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.
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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.
Areas that matter most to dialogue participants:
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Being ambitious for the use of health and care data in
research and innovation. 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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Identifiable and sensitive data should be treated with the
utmost care. If it is, it has the potential to bring public
benefits.
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The benefits from the use of health and social care data must
be fairly distributed, with protections against
discrimination and unjustified geographic disparities.
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Safeguards are needed to protect society from data
manipulation, especially where data could be used to achieve
political or financial ends.
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Public benefit must outweigh profit, with profitable uses of
data rigorously scrutinised before data is used.
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.
