Up for sale: What is happening to your Health Data?

Looks like the Tories were stitching up a deal to sell NHS data in 2019.

On 12 May this year, then health secretary Matt Hancock quietly issued a legal direction to every GP in England, instructing them to upload their patient records to a central database, with patients given just a few weeks to find out about the plans. This has now been paused.

However, if you live in Somerset tough, because Somerset Foundation Trust has already done a deal.

Opendemocracy is holding a free webinar on the subject.

Principle stitched up in Davos in 2019 (from Politico website)

The U.K. government began courting U.S. data and surveillance firm Palantir to work on ways to tap patient data from the NHS back in January 2019, according to documents seen by POLITICO’s Graham Lanktree that shed light on the relationship with the controversial company.

In a meeting at Davos that year, former Trade Secretary Liam Fox encouraged the U.S. data giant’s executives to make use of “untapped” NHS data. Internal emails, meeting briefings and readouts obtained through freedom of information law show that efforts to help Palantir win U.K. government work were underway long before the coronavirus crisis, with ministers and officials making direct references to the potential of Britain’s health service as they tried to drum up inward investment.

NHS Somerset Foundation Trust has already done a deal

NHS data sale ‘an invasion of privacy’, campaigners say

BBC News www.bbc.co.uk

An NHS trust has said it will consult patients before selling 1.1 million medical records it owns to a private firm later this year.

NHS Somerset Foundation Trust struck the deal with Sensyne Health in November 2020 but is yet to transfer any information.

Campaigners have labelled the plan “an invasion of privacy”.

The trust said: “We will not share information with Sensyne that can identify a patient.”

The deal is worth up to £1.25m and Somerset is one of 11 NHS trusts which have signed deals with the Oxford-based data firm.

NHS Somerset Foundation Trust runs mental health and community services, 13 community hospitals in Somerset and hospital services from Taunton’s Musgrove Park Hospital.

Earlier this month, the creation of a central digital database using GP records in England was pushed back, amid concerns patients needed more time to understand the system.

Sensyne said it uses “anonymised” data, which it analyses on behalf of other organisations, including drug companies, enabling its clients to produce new drugs and treatments.

In return, NHS trusts can get shares in the company and a proportion of profits.

However, privacy campaigners have disputed whether the data really is anonymised and have claimed it could still be used to identify patients.

Former IT consultant David Orr from Taunton has been campaigning against the deal since it was announced.

He said: “In my case I’ve got a particular combination of historical [health] conditions and it wouldn’t take a computer very long to work out that my age range, gender and a couple of historical conditions would only really be me.”

He also believes people should be able to opt out of having their data shared for commercial purposes.

Somerset NHS Foundation Trust has confirmed patients who have opted out of sharing information via the national data opt-out will still have their data shared under this agreement.

Mr Orr said this is unacceptable: “In the private sector, when we share our details for example to a phone company, you don’t expect those to be shared with other organisations.”

CEO of Sensyne Health Lord Drayson, said: “This agreement will enable research to improve patient care and accelerate medical research by helping to grow our overall data set to over 5.6 million patients.”

The trust has told the BBC it will supply a patient’s age range, gender and the first part of their postcode, as well as medical information. This fits the definition of “anonymised” data required by the data protection law GDPR, it added.

Somerset NHS Foundation Trust’s director of strategic development and improvement David Shannon said: ” We will not share information with Sensyne that can identify a patient.

“The terms of the contract provide our organisation with the investment needed for us to anonymise the data before providing it to Sensyne Health and for us to benefit from any breakthroughs that Sensyne makes.

“The monies we receive from Sensyne Health will be invested in our analytical capability to support research and improve patient care.

“We want people to have confidence in how their personal data will be used and we know that it’s crucial that, from the start, we clearly explain this to people.

It has has promised “local engagement events” in the autumn.

A spokesperson for Sensyne added: “We never sell data, we never share data, data never leaves Sensyne, and we never use data for anything other than for the purposes of medical research.

“The data is owned by the NHS Trust not Sensyne. Sensyne complies with the strictest standards of data security and privacy.

What’s happening to your GP data and what can you do about it?

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Welcome! You are invited to join a webinar: What’s happening to your GP data and what can you do about it?. After registering, you will receive a confirmation email about joining the webinar.

Health data is both hugely sensitive and immensely valuable – to our health, and to big business. The UK’s NHS data has been valued at £10bn. And our GP data – with details of everything from diagnoses and medications to depression, abortions, sexually transmitted infections and addictions – is the most detailed, valuable and sensitive of all.

On 12 May this year, then health secretary Matt Hancock quietly issued a legal direction to every GP in England, instructing them to upload their patient records to a central database, with patients given just a few weeks to find out about the plans.

openDemocracy, along with a coalition of other groups issued a legal threat that has forced the government to pause the process. But what does this mean for your health data, what will happen next, and what can you do about it?

Join us (register here) in the free, live discussion as we explore this topic with an expert panel. Hear from:

Helen Salisbury – GP, lecturer, and writer for the British Medical Journal

Diarmaid McDonald – Lead organiser, Just Treatment

Phil Booth – Coordinator, MedConfidential

Chair: Caroline Molloy – editor, openDemocracy UK

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