Critics of giant NHS database 'are scaremongering'

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Opponents of the plan to share medical records on a giant database are "peddling scaremongering myths", medical research organisations say.

The warning by Patients4Data, an umbrella group for more than 70 bodies, comes after the launch of Care.data was delayed this week to the autumn.

Patients4Data said the opponents risked preventing patients benefiting from a revolution in modern medicine.

But privacy campaigners maintain their concerns are justified.

What is Care.data?

Medical records

When it is compiled, Care.data will be a giant database of medical records showing how individuals have been cared for across the GP and hospital sectors.

Researchers believe the information will be vital in helping them develop new treatments, as well as assessing the performance of NHS services.

The records will be pseudonymised, which means the identifiable data has been taken out. Instead, they will just contain each patient's age range, gender and area they live in.

Although researchers can apply for those safeguards to be lifted in exceptional circumstances, such as during an epidemic, this will need the permission of the health secretary.

The central database will involve taking records from GP practices and linking them with hospital files.

Experts say it will enable them to assess diseases, examine new drugs on the market and identify infection outbreaks, as well as monitor the performance of the NHS.

To date, information has been available about what happens in hospitals, but not what goes on in GP surgeries.

The information made available on the database will be stripped of identifiable data, although it will include the gender, age band and area a patient lives in.

'Force for good'

The collection of medical records was due to have started in April, but NHS England announced on Tuesday that would now not happen for six months to allow for a fresh public information campaign.

Influential bodies such as Healthwatch England and the British Medical Association support the principle of sharing data but had called for a delay, saying the public had not been properly informed about the scheme.

But concerns had also been expressed that the programme could lead to privacy problems and data breaches.

Where sharing data has worked

The care.data programme faces a challenge of trust. NHS England will have to persuade people the benefits of sharing medical data outweigh any risks.

The Clinical Record Interactive Search (CRIS) at the Maudsley hospital offers an encouraging model.

In six years it has accumulated data on 250,000 patients. Just two people have opted out.

Those running the project say they have gone to great lengths to ensure patients understand what the scheme is for and how it works.

The information is highly sensitive but identifying details of patients and their carers are stripped out. Every application to use the system goes through an oversight committee led by patients.

The project has exposed high mortality rates for people with mental illness, and is shaping new approaches to improve their care.

George Freeman, a Conservative MP and founder of Patients4Data, which represents charities and drug companies, said: "There are those who oppose not just the mechanism of data handling but the principle of patient empowerment and greater accountability.

"We cannot let opponents peddling scaremongering myths stop patients benefiting from this quiet revolution of modern medicine. There are issues to be addressed. But data is a force for good, not a Big Brother-style conspiracy."

'Safe and transparent'

But a spokesman for MedConfidential, one of the most vocal opponents of Care.data, said it would like the project replaced.

"MedConfidential is campaigning to ensure that every flow of data into, within and out of the NHS is consensual, safe and transparent.

"The problem with Care.data is not mere miscommunication, it is that the entire scheme fails to meet the first and last of those criteria. It remains to be seen if it can be made safe, but it is for its proponents to prove this to the public's satisfaction before any upload is permitted to proceed."

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