Dr Nicola Byrne, the National Data Guardian for health and adult social care in England, has spoken out about her high expectations for the planned NHS federated data platform to abide by strong privacy and security frameworks.
However, according to the Guardian, the new data platform for England, which will incorporate millions of personal medical records into one of the biggest health data platforms, is to be launched without seeking new patient consent.
NHS England issued a tender notice earlier in the year to kick-start the provision of the new patient data ecosystem, valued around £240 million. The chosen supplier should enhance the integration of systems to enable trusted data sharing within the NHS, as well as with patients.
The brief has been stated many times: to build a secure ecosystem of data technologies and enable services across the NHS in England. In August 2022, members of Digital Health were invited to participate in a Networks debate on the Federated Data Platform, along with other key healthcare figures.
Although the government has been excluded from these talks, data had a major role in reshaping medical care in the country’s fight to contain coronavirus in 2020 and 2021, when the virus was most prevalent. The NHS was the focal-point of a huge effort to share data relating to the virus with the government, public, Office of National Statistics, and within the NHS and social care ecosystem.
Nicola reiterated in her blogpost that the NHS was the backbone of the country which since it inception in 1948 has “amassed comprehensive cradle-to-grave information about tens of millions of us”. She justifies introducing this system and unlocking the power of data whilst preserving the public’s trust.
Data must be keep confidential and never treated carelessly, as its “collection is founded on our trust”, she says.
Nicola Bryne said: “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” however follows her comments with a reminder that making data insecurely accessible to the public would be damaging to public trust.
The importance of introducing a federated system is to “provide real-time, reliable insights to those making decisions about how care is planned and delivered”, offering quicker diagnoses for patients over a secure digital network and sharing data with other healthcare professionals.
She explained her version:
“Improving timely, meaningful access to high-quality data, visualised in a way that supports more informed decision-making by those empowered to use it, is key to improving health and care access, outcomes, and experience for all”.
She warns of the common failings of previous initiatives. Nicola elaborated on the work of her team and advisory board that continue to ensure the system mitigates privacy concerns, in accordance with the NHS’ core values. She has called for the NHS England to listen to patients’ and professionals’ views in a research group to determine what next steps should be made, and then adapt plans.
She writes: “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”.
In a shock move, the contract may be awarded to American firm, Palantir, whose Chairman is a supporter of Donald Trump. The company is also accused of working with border forces, spies and police. The contract could be signed off by Heath Secretary, Steve Barclay in the coming weeks, however the NHS refutes this. The NHS says that companies can continue to express interest in January ,with the tender expected to begin in summer 2023.
