The National Data Guardian, Dr Nicola Byrne, has shared a blog in which she discusses the planned NHS federated data platform along with the topic of public trust in data.
Dr Byrne begins by highlighting how the NHS has amassed “comprehensive cradle-to-grave information about tens of millions of us, whatever our social and economic circumstances or ethnic origin” since it began in 1948. This store of confidential data is a national treasure, she notes, and its collection is founded on trust.
She describes how the value of this data can only be realised if it is organised in a manner which enables the NHS to use it to improve treatments, services and care. Sealing it away where it cannot be used is of no purpose, but equally, making it available in ways that could damage public trust is counterproductive.
Emphasising the need for balanced judgement, Dr Byrne writes: “The importance of achieving the right balance is coming into sharper focus now, as NHS England begins asking companies to tender to provide a federated data platform. This ‘ecosystem of technologies and services’ will provide real-time, reliable insights to those making decisions about how care is planned and delivered.”
She strongly agrees with the aims and ambitions of NHS England’s federated data platform (FDP) programme, 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” in order to improve health and care access, outcomes and experience for all. She notes that it is important for the FDP to avoid “common pitfalls around trust and transparency that have frustrated previous initiatives in this area.”
In order to support the programme, Dr Byrne and her team have provided advice in this area.
Firstly, Dr Byrne says that she has made it clear that NHS England “needs to allow sufficient time to listen to patients and professionals and then adapt plans according to what it hears.”
The programme must be transparent and always strive to provide clear and 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 this “provides an opportunity to meaningfully engage the public and build confidence in the system,” Dr Byrne writes. She adds that the FDP has subsequently provided assurance that it will carry out research with the public which will inform its communications and engagement plans, which will be shared with the National Data Guardian for review.
“I have advised the programme to develop comprehensive information governance guidance, clear governance frameworks and security measures for the platform,” Dr Byrne continues. “I expect that it will continue to engage with me on these matters.”
In addition, the FDP has been counselled on the importance of remaining mindful of the NHS core values. Dr Byrne comments that whilst her role is to provide guidance, ultimately decisions about the FDP’s procurement lie with the Department of Health and Social Care and NHS England. “To date, I’m pleased to say those running the programme have listened and responded thoughtfully to my advice,” she adds.
Dr Byrne will continue to stress the importance of the public and professionals alike having confidence in the FDP platform in order for it to succeed, and highlights the importance of “learning lessons from history to avoid repeating mistakes. The care.data programme failed when it could not provide satisfactory answers to a series of questions and tests set by (previous National Data Guardian) Dame Fiona, including key ones around transparency and the clarity of policy and communications.”
To conclude, Dr Byrne notes that the FDP’s work to support better health and care through use of data is “too important an ambition to fail” and shares her hopes that the NHS with “engage with these critical themes from the outset”.
