The programme to create a federated data platform for the NHS must be clear and open with the public from the start, to avoid making the same mistakes as the failed Care.data platform, according to national data guardian Nicola Byrne.
The NHS federated data platform has been billed as an “ecosystem of technologies and services to be implemented across the NHS in England”, and an “essential enabler to transformational improvements across the NHS”, but critics have been sceptical about the plans.
Byrne said she strongly agreed with the programme’s ambition to improve “timely, meaningful access to high-quality data, visualised in a way that supports more informed decision-making by those empowered to use it”, but warned that it must “avoid common pitfalls around trust and transparency that have frustrated previous initiatives in this area”.
She added: “Public trust can only be earned through a commitment to honesty and transparency. There must be no surprises for people about how their private information is being used.” Byrne said that as data guardian, she was providing advice to the NHS in several areas around this.
“I have made clear that NHS England needs to allow sufficient time to listen to patients and professionals and then adapt plans according to what it hears,” she said.
“I have advised that the programme must be transparent and always strive to provide clear, easy-to-understand explanations of the platform, what data it will use, how it will use it, the benefits of the programme, and, just as importantly, the risks. Being open about risks and their mitigations provides an opportunity to meaningfully engage the public and build confidence in the system.”
The NHS is due to go out to procurement for the federated data platform soon, and Byrne warned that the programme’s work to support better health and care through better use of data was “too important an ambition to fail”.
The government’s previous data platform plans have not been successful. The Care.data programme was launched in spring 2013, intended to extract data from GPs to be stored in a central database held by the then Health and Social Care Information Centre.
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The aim was to create a data platform that could help researchers develop new treatments and improve care, but the programme struggled with public backing, mainly because of an extremely poor information campaign and not being clear with the public on how exactly the data would be used, how people could opt out of having their information shared, or the potential risks of sharing the data.
The plans were slaughtered by privacy campaigners, and eventually, following a review by former national data guardian Fiona Caldicott on opt-outs and data-sharing in the NHS, the government decided to scrap the programme.
Byrne said: “The Care.data programme failed when it could not provide satisfactory answers to a series of questions and tests set by Dame Fiona, including key ones around transparency and the clarity of policy and communications.
“I hope the NHS will keep this lesson in mind and engage with these critical themes from the outset, so that the federated data platform programme succeeds in inspiring confidence and support, where Care.data did not.”
According to the NHS, the platform will enable a “secure data environment policy for any use of NHS health and social care beyond direct patient care – for example, when using data to support population health management and operational planning”, and its procurement will also support integrated care systems to implement a secure data environment policy.