Annual report of National Data Guardian outlines aim of finding balance in use of data
The National Data Guardian (NDG) for the health and care sector is working on a possible framework for the appropriate use of data in new digital healthcare solutions.
It has referred to the work within its newly published annual report, which charts its findings and priorities in its efforts to establish how patient data can be used for individual care and research while maintaining public trust.
The publication comes three years after Dame Fiona Caldicott (pictured) was appointed as the first NDG, and focuses largely on work that has been done in that time. But it also includes several pointers for her team over the next year.
These include looking at how it can best support the use of data in new healthcare technologies in line with patient expectations and preferences.
It points to a proposal in the Government’s recent Industrial Strategy: Life Sciences report, that there should be a regulatory and commercial framework to ensure the value of innovations that use health data is properly recognised by the NHS. This could help to deal with some of the public concerns over commercial organisations using health and care information.
A section of the report says that, while the public is generally supportive of their data being shared for research, they are cautious about how it might be used by commercial companies.
Innovation and trust
Caldicott commented: “New technologies and ways of sharing data mean that we can now gain huge benefit from the sharing of health and care data, both in terms of individuals’ own care and the broader social good of advancing research and treatment. However, as NDG I have seen time and again that the most praiseworthy attempts at innovation falter if they lose public trust.
“Those entrusted with looking after and using patient data must demonstrate their right to be trusted by adopting the highest standards of data security and giving people a right to a genuine choice over how data is used. The public must be included in understanding and supporting innovation which relies on data generated by their use of health and care services.”
Other priorities include a commitment to explore a consensus about the way that patients’ reasonable expectations should influence and shape the way that data is used for individuals’ care; and to liaise with a range of government bodies on the safe and transparent use of data.
It also emphasises the importance of training and education for health and care professionals on the appropriate use and sharing of data.
The report emphasises the continued importance of the three principles that have underpinned the NDG’s work: to encourage information sharing to provide care; that there should be no surprises to citizens and they have choice about the use of their data; and there must be a dialogue with the public to increase their knowledge and choices on the issue.
Images from GOV.UK, Open Government Licence v3.0