For people like me who are endlessly fascinated by data and privacy, 1 February was a date of note. That was the day NHS England officially took over NHS Digital. The merger was a surprise to many when it was announced in 2021. One former chair of NHS Digital called it a “significant retrograde step” that could undermine the public’s data rights. And, as February 2023 dawned, the national data guardian for health and adult social care, Nicole Byrne, said NHS England now needs to “demonstrate it is trustworthy” when it comes to handling patient data.
It’s often said the NHS is sitting on a goldmine of data – one that the accountants EY estimated is worth £9.6bn a few years ago. Primary care records span 55 million people, and there are a further 23 million care records where patients received secondary or specialist care. The opportunity to use that data to research and improve patient monitoring, prevent disease and the worsening of long-term conditions, and innovate new treatments is huge.
But it’s also one that is fraught with fears for privacy and fear of private sector involvement with the NHS. Trust is at the heart of the problem. That comes in three forms:
- lack of trust in government to deliver when it comes to health (or to deliver without corruption/cronyism);
- lack of trust in technology companies to keep our data safe; and
- lack of trust in any private company motivated by profit, not to use our data for unwanted/unknown purposes.
The impact of the Covid-19 pandemic
There have been two major attempts to create a centralised database of primary care – GP – data. The most recent was paused in 2021 after public and media criticism. It was a PR battle as much as an infrastructure project – one privacy campaigner called it an “NHS data grab” and millions of people opted out before the benefits could be explained. Later the budget was reduced dramatically, raising questions about its future.
The rollout plan may have been flawed, but the timing looked positive. Public sentiment on sharing health data shifted during the pandemic. A national data sharing agreement was put in place by the health secretary, allowing additional information from 50 million patients’ GP records to be made available to professionals such as pharmacists and paramedics. The agreement also supported record-sharing and appointment booking across GP practices and NHS 111 services. And as individuals, many of us shared our Covid-19 status and location to track and minimise the spread of disease.
Many of these programmes will continue, and there are others too. The Our Future Health programme, aims to recruit 5 million volunteers to help develop new ways to prevent, detect and treat disease. And the Goldacre review, which was published in April 2022, provided a vision for the development of Trusted Research Environments (TREs) with enhanced privacy protections, that would have faster access to well-curated national and local data.