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Tue 26 October 2021

The collection of medical information proposed by the Health and Social Care Secretary could have vast consequences, despite limited oversight, reports David Hencke

Sweeping changes to the collection of health and social care data, which would allow the Government to commodify all of individuals’ personal medical data, is being proposed by the Health and Social Care Secretary, in a new shake-up of the health service.

The changes are being sold to the public as a new right to “own” your own health data and, in Matt Hancock’s own words, “will deliver better treatment for patients, better health results for people who need care and support, and better decision-making, research”.

Phil Booth, co-ordinator of the health privacy platform medConfidential, said: “The proposal is a complete con. You can’t own your own data. What it does is make it a valuable tradeable commodity that can be sold on to other people and organisations.”

Plus, the Government’s claim that it is providing a new right to patients does not stand up to scrutiny – since anybody can currently request their medical records from their GP with no questions asked.

The changes were slipped out this week under a draft consultation paper on “data saves lives” as part of a new Health and Social Care Bill, expected to be tabled during this Parliament. The bill ends the independence of the NHS and puts ministers in charge of the service.

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The proposed changes follow the Government’s collection of data to fight the COVID-19 pandemic, with several multi-million-pound contracts awarded to private firms that were employed for the task. Many of the later contracts included setting up data systems covering local government, social care and a new Biosecurity Centre to fight future pandemics.

At the beginning of the crisis, Government ministers promised that the data collected on people would be destroyed once the pandemic is over. Now, this information will form the core of a much larger patient database covering the NHS and social care, including the large number of care homes in the private sector.

It will be able to be used by health researchers, the NHS, local government, private care homes and private pharmacies – all of which hold personal information on individuals at present, covered by data protection laws. The Government maintains that the data will be anonymised and kept secure.

“None of the changes we are making will remove the duties of organisations to meet the requirements of data legislation,” the Government proposals state. “This means that all uses of an individual’s data will need to be necessary, proportionate, transparent and subject to that individual’s rights to access, correction and information on use.”

Yet, under the proposed bill, the Health and Social Care Secretary has the power “to require data from all registered adult social care providers about services they provide whether funded by local authorities or privately by individuals”. Since some social care residents suffer from dementia, it is not clear how individual consent will be exercised.

The same power is being applied to all private hospitals, requesting that they hand over information. Again, given that the NHS and private companies run mental health hospitals, it is not clear how patients will be able to give their consent.

The bill itself will not contain the details of how confidential, personal information will be handled, but instead it will give a general power to ministers to decide on the course of action.

The changes will be passed by Parliament using secondary legislation known as statutory instruments. These are the least scrutinised laws considered by MPs and do not require parliamentary debate – as in the case of 398 of the 425 laws governing the pandemic.

The consultation paper states that the Government “will use secondary legislation in due course to enable the proportionate sharing of data, including, where appropriate, personal information, for purposes of supporting the health and care sector (for example, for invoicing, commissioning, planning, analysis, policy development, audit and risk stratification) without breaching the common law duty of confidentiality”.

Secondary legislation could also be used to allow the Department of Health and Social Care to share the information it has gathered with other departments – expanding the remit of the great data grab.

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