Image source: GOV.UK, Open Government Licence v3.0
National Data Guardian Nicola Byrne has declared that plans to build a federated data platform for NHS England should involve comprehensive guidance and frameworks on information governance and security measures.
She said she has been working with NHS England on the plan and that, while the relevant decisions lay with that organisation, she hopes it will continue to work with her.
The federated data platform, for which NHS England tendered for support in April, has been described as ‘ecosystem of technologies and services’ and will be built on five use cases: population health and person insight; care co-ordination; elective recovery; vaccines and immunisations; and the supply chain.
Writing in a blogpost highlighted on the GOV.UK announcements page, Byrne said she supports the plan in its aim of providing high quality data for clinicians and others, but that it requires “balanced judgement” in how it handles data to preserve public trust.
She said she had advised that the programme should be transparent, with clear explanations of the platform, what data it will use, how it will be used and the benefits and risks. Information about risks and their mitigations should be easy to find, which would promote confidence in the system.
Assurances and commitments
“The programme has subsequently assured me that it will be carrying out research with the public to determine what information people want and need about the programme,” she said. “This will inform its communications and engagement plans, which it has committed to share with me for review.”
She expressed the need for information governance guidance, clear governance frameworks and security measures, and for there to be sufficient time to take in any public concerns.
“The value of our data will only be realised if it can be organised in such a way that the NHS is able to use it well to improve treatments, services and ultimately our health and care,” she said. "Sealing this precious asset in a vault where it cannot be used would render it worthless.
“However, making the data available in ways that damage patients’ trust would be counterproductive. If people lose their trust in how the health and care system handles their confidential data things will fall apart, and plans for data use will not hold.”
The role of the National Data Guardian is to work with health and social care services to strengthen public trusts in how they protect the confidentiality of personal data.