UNISON joins the fight over proper use of health data

UNISON News

The union seeks government guarantees that health data will be used in an ethical manner, assigned its true value and used for the benefit of UK healthcare

The government has announced its intention to take a copy of the entire GP-recorded medical history of patients in England from this summer – in part for commercial use.

There has been no public consultation on the plans, though some details have now been published by NHS Digital.

The full list of sensitive information or ‘codes’ that the government will take is provided by medConfidential.

From 1 July 2021, not only will every patient’s GP medical history be copied, it will be automatically updated with every new medical event in their lives, including appointments.

This uploaded data will include sensitive information about patients, whose names will be converted into ‘pseudonyms’.

Under the new scheme, health data is not only going to be used for public health purposes and ethically-approved research – which UNISON supports – but it will also be sold to 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 data helps the NHS predict and plan for health issues and needs in the future, there is uncertainty and lack of trust about what private companies will do with it.

Profit-driven companies prefer to patent and copyright the insights and developments derived from patient data and sell it on – charging the NHS for the data-driven products, medicines and services they have produced.

Allison Roche, the UNISON policy officer who is leading on the data issue, said that the fast pace of the data rollout in the NHS was “unprecedented”.

“UNISON is campaigning for guarantees that our health data will be used in an ethical manner, assigned its true value and used for the benefit of UK healthcare,” she said.

“So far, the government has failed to deliver public transparency and trust, and little if any consultation on what they are doing with data and artificial intelligence in the health sector. We must hold them to account, now and in the future.

“The government should take steps to protect and harness the value of our health data to ensure that the public can be satisfied that its value will be safeguarded and, where appropriate, ring-fenced and reinvested in the UK’s health and care system.”

UNISON is currently working within alliances to engage with the government on how citizens, workers, patients and service users in health and social care settings can benefit directly from both the data-driven health advances themselves and from the value the data generates.

The union is asking the government to postpone the 1 July GP data grab, so that it can consult and properly inform patients in England as to why it wants the data, and how there can be more control and visibility in how it is used and by whom in the future.

In the meantime, patients themselves can act to keep their data in NHS hands only. Taking this action will not affect their medical care.

  • Patients can stop their data leaving a GP practice for purposes other than direct care by completing this form. Details of children and dependants can be included. The deadline to get your form to a GP practice is 23 June 2021.
  • If patients want to stop non-GP data, such as hospital or clinic treatments, being used for purposes other than their direct care, they can use this form for individuals aged 13 or over, this one for children under 13, and this for an adult dependent. There is no deadline, but the sooner it is done, the sooner the opt-out takes effect.

The government tried to force a similar data grab seven years ago, but was forced to back down by a huge public outcry.

A new petition is attempting to force health secretary Matt Hancock into a similar climbdown.

Sign the petition

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