UNISON has welcomed the government’s decision to postpone its planned data grab of all medical histories held by English GPs.
The controversial plan had already been delayed from July to September, after widespread criticism from GPs, civil society organisations, trade unions and others.
Then, in July, came the backdown, and the decision to “pause” the collection of data in order to provide more time to engage with GPs, patients, health charities and others.
In a letter to GPs, Jo Churchill, the under-secretary of state for health and social care, wrote: “While we are continuing to work on the infrastructure, and communication for the project, we are not setting a specific start date for the collection of data.”
She gave the commitment that NHS Digital would not upload data until it has the following in place:
- the ability to delete data if patients choose to opt-out of sharing their GP data with NHS Digital, even if this is after their data has been uploaded;
- the backlog of opt-outs has been fully cleared;
- a trusted research environment has been developed and implemented in NHS Digital;
- patients have been made more aware of the scheme through a campaign of engagement and communication.
UNISON had campaigned against the data upload as proposed, concerned that alongside the ethical use of such information for research purposes, it would also be sold onto third party ’market insight’ companies and ‘information intermediaries’ that service pharmaceutical, health insurance and tech companies.
Currently, the NHS makes about £10 million a year from selling access to patients’ hospital data, which feeds a market worth an estimated £10 billion a year.
While seeking government guarantees on the future, ethical use of health data, the union encouraged its members – as patients – to use available tools to keep their own data in GP hands only.
Following the backdown, UNISON policy officer Allison Roche said: “UNISON welcomes this common-sense and inclusive approach, but this should have been the approach right from the start – and central to all NHS data and AI developments.
“Trust, consent and transparency must be at the heart of the health and social care digital transformation.”