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Controversial NHS "data grab" rolled out in Westcountry

By North Devon Journal  |  Posted: January 29, 2014

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Family doctors in the Westcountry have voiced fears over a controversial cull of confidential patient information.

Leaflets about the care.data scheme will be arriving on doormats across the region this week.

Operated by NHS England, it will seize certain patient data from GPs for research and planning purposes.

But although information will be anonymous, there are concerns that the vast sum of data will be too commercially valuable to resist selling.

Dr Matthew Stead, a GP in Bodmin, said he had deep reservations about care.data.

“I do not think I will be uploading my care data.”

Dr Stead said that although the scheme was touted as something for internal NHS use only, he was worried information would be sold on.

“I can believe that it will be strictly monitored at first, but I think over time that will reduce.

“The temptation (to sell) will be too great to resist.”

Dr Graham Lockerbie, NHS England Medical Director for the Devon, Cornwall and Isles of Scilly Area Team, said care.data was about improving safety for patients.

The scheme has attracted an utter polarity of opinions.

To some it is a dangerous data grab corroding the sanctity of the GP patient relationship while others herald it as an unrivalled research opportunity and pathway to better care.

The care.data programme, run by NHS England, arrives in the Westcountry this week.

It will mean that for the first time ever, certain information about a patients’ care and treatment will leave the safety of a GP practice.

A recent poll for Pulse magazine found 40 per cent of GPs were so uneasy about care.data that they would to opt out of the system.

Meanwhile privacy campaigners believe it will dismantle the relationship between GPs and their patients and dismissed the leaflet drop as laughable.

Emma Carr, deputy director of Big Brother Watch told the Western Morning News:

“Our medical records contain our most personal information and given the real privacy concerns about amassing a huge central database of patient information, the NHS should be showing far more respect than such a lazy effort to inform people about these changes.”

The care.data programme will cull patient information such as date of birth, full postcode, NHS Number and gender from clinical records held by GPs.

These will be linked with hospital records in a secure system which it is hoped will help health chiefs map out trends and needs.

However, there are concerns about whether the information will eventually be sold on to organisations outside the NHS, such as drug companies.

There are also fears that it may be possible to perform a jigsaw identification of some patients with a rare condition.

As it stands, individuals must actively opt out of the scheme by contacting their GP - something which could vacuum up valuable doctor’s time at their busiest period.

Former GP Fleur Fisher, a member of Yealm Medical Centre Patients’ Group condemned the initiative.

“The official letter fails to tell us that our personal information will be identifiable and that it will be sold to a variety of scientific research and other organisations.

“Neither we nor our GPs will know how it is used or who can read it. Nor can it ever be deleted.

“The Information Commissioner insisted that we must be told that we can opt out of this data grab, but NHS England failed to enclose an opt-out form .

“Unless we opt out, our GPs are required to release all our information.”

Dr Mike Richards, a GP at Newton Abbott and the medical secretary of the Devon Local Medical Committee (LMC), which represents GPs, said he could understand people’s misgivings.

“What we can never be sure of is where the information is going to go and how it will be used.

“I suppose it depends on how paranoid you want to be.”

Dr Richards also agreed that the Government handling of large data projects in the past had hardly inspired confidence.

“For a leak of information it only requires one person and that can create a problem.”

Perranporth GP Dr Peter Merrin, chairman of Cornwall LMC, said family doctors in the UK held the most complete medical records in the world representing a “huge source of medical information.”

However, he sounded a note of caution over the data leaving NHS hands.

“At the moment we are assured that the data is going to be used to shape health and care services,” he said.

“We would be worried if there were ever any plans to sell this data to commercial organisations.”

He said that the method of extracting information would mean “little chance” of individuals being identified.

However, he added: “There is a theoretical risk that patients with very rare disorders may be inadvertently identified in a particular geographical area although we are led to believe that strict controls are in place to prevent such an occurrence.”

He said: “Groups of patients may be identified as having poor health outcomes in certain areas which may lead to life assurance companies weighting policies from applicants in these areas.

“Unfortunately, we won't know if this is the case until the system has been in place for some time.”

Andrew George, St Ives MP and member of the Health Select Committee, said he was supportive of the plan in principle, but “still need to be persuaded” the proper protections were in place to ensure patient confidentiality.

Dr Graham Lockerbie, NHS England Medical Director for the Devon, Cornwall and Isles of Scilly Area Team, said it was solely about improve the safety and care of patients.

“The NHS has been collecting information like this from hospitals for decades but until now we’ve been missing information about the quality of care provided outside hospital.

“This initiative is about upgrading our information systems to get a more complete picture of the quality of care being delivered across all parts of the NHS and social care.”

An information line has been set up for patients to call if they have concerns on 0300 456 3531.

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  • Tacitus  |  January 29 2014, 9:40AM

    I'd be much happier if in situations such as this, people had to consent to such information being used - in other words, opt IN should be the principle.

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