Opposition is growing to Tory plans that would allow private businesses and others to access the full medical histories of 55 million NHS patients in England.
The histories would be pooled into a single database from 1 July and individuals have only until 23 June to opt out.
All 36 doctors’ surgeries in Tower Hamlets, east London, have already agreed to withhold the data when collection begins. An email has been circulated to about 100 practices across north east London calling on them to also consider whether the data collection is legitimate.
And the revolt could spread to many more.
Records centralised from GPs include sensitive information regarding issues such as mental health, abuse, fertility and criminal records.
Names will be replaced with unique codes in the new data set. But the NHS will hold the keys to unlock the codes “in certain circumstances, and “where there is a valid legal reason”, according to its website.
Corporations such as major pharmaceutical firms and insurance companies could seek to use the data to boost profits. They might even be able to target individuals.
Tower Hamlets GP Jackie Applebee told Socialist Worker, “General Practice is in crisis. With the pandemic, a declining workforce and increasing workload we are struggling to provide the services our patients deserve.
“The government and NHS Digital are well aware of this. But they expect practices to inform patients of this comprehensive extraction of their health data, giving patients the chance to opt out, within three weeks.
“Some of it is deeply personal”.
Jackie added, “Previous fiascos have shown that data is far from secure. Tower Hamlets GPs believe that our patients should be able to make a fully informed decision about whether they consent for their data to be shared.
“This means extensive consultation in multiple languages and across many media for those who struggle with the written word.
“There is not time to do this in three weeks and if GPs enable this data sharing we risk undermining the trust of our patients.”
Sue
If the plan is not paused, a coalition of groups including the National Pensioners Convention (NPC) and the Doctors’ Association UK, could sue the government’s health department. They will go to court as soon as next week, to freeze the data-sharing scheme immediately.
NPC general secretary Jan Shortt said, “We all understand the importance of the collection of data for a variety of research and analysis to help improve and run health services. But the overwhelming majority of the general public, including NPC members, have no idea that this is happening.”
Shortt added that this rushed process involved a form which “you need to complete and then give, take, send to your GP”.
“The deadline for doing so is 23 June which is absolutely unacceptable given that millions of people have no idea what is happening,” she added.
The issue will be one of the key themes of the NPC virtual annual convention, which begins next Tuesday.
The coalition challenging the government says that data sharing has to be based on consent. This means patients must be able to know which third parties will have access to the data—and for what purposes.
A similar scheme—called care.data—was attempted in 2013. It collapsed after widespread opposition.
With that plan, the government said it had delivered a leaflet about what would happen to every household in England. This time ministers have decided that it’s easier to smuggle through the changers without properly telling anyone.
It’s important that opponents of the scheme are wary of false friends. Tory MP David Davis is among those saying the move is wrong.
But health workers, pensioners and campaigners should rely on their own strength, not Tories.
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