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Concerns spark six month delay in medical records sharing plan

Controversial plans to share medical records will be delayed until later this year “to allow more time to build understanding of the benefits of using the information”, health officials have said.

Pressure has been mounting on NHS England, the body behind the scheme, after doctors leaders said patients need to know how their data will be used outside the NHS.

Both the British Medical Association (BMA) and the Royal College of GPs (RCGP) have both warned that patients are being kept in the dark about the plans.

NHS England said that the roll out of the care.data scheme, that was due to take place in April, will now happen later this year.

A spokesman said: “To ensure that the concerns of the BMA, RCGP, Healthwatch and other groups are met, NHS England will begin collecting data from GP surgeries in the Autumn, instead of April, to allow more time to build understanding of the benefits of using the information, what safeguards are in place, and how people can opt out if they choose to.”

Patients, doctors and other professional organisations, have raised concerns that they have not been given enough time to learn about the project.

NHS England has said it will work with patients and professional groups to promote awareness of the scheme.

“We have been told very clearly that patients need more time to learn about the benefits of sharing information and their right to object to their information being shared,” said Tim Kelsey, national director for patients and information at NHS England in a statement on the situation today. “That is why we are extending the public awareness campaign by an extra six months.”

Chaand Nagpaul, chair of the BMA’s general practitioners committee, said: “With just weeks to go until the uploading of patient data was scheduled to begin, it was clear from GPs on the ground that patients remain inadequately informed about the implications of care.data.

Chaand Nagpaul BMA

Chaand Nagpaul

“While the BMA is supportive of using anonymised data to plan and improve the quality of NHS care for patients, this must only be done with the support and consent of the public, and it is only right that they fully understand what the proposals mean to them and what their rights are if they do not wish their data to be extracted.

“This is all in the best interests of patients and GPs, and the BMA looks forward to working with NHS England to ensure that the public is properly informed and that safeguards are in place before uploads begin.”

Professor Nigel Mathers, honorary secretary of the RCGP, said: “The extra time will provide (NHS England) with the chance to redouble its efforts to inform every patient of their right to opt out, every GP of how the programme will work, and the nation of what robust safeguards will be in place to protect the security of people’s data.”

Anna Bradley, chair of Healthwatch England, said: “This is a really positive move by NHS England. They have shown a willingness to listen to what the public have to say about the way their health and care services are run.”

The idea behind the scheme is to link data from GP records with information from hospitals to give an idea of what happens to patients at all stages.

The data that will be extracted from GP systems includes information on family history, vaccinations, referrals for treatment, diagnoses and information about prescriptions.

healthwatchAnna Bradley

It will also include biological values such as a patient’s blood pressure, body mass index and cholesterol levels.

Personal confidential data identifiers will also be taken, such as date of birth, postcode, NHS number and gender.

The written notes a GP makes during a consultation will not be extracted. The data will be held by the NHS Health and Social Care Information Centre and anonymised by officials there.

Fully anonymised data will be made available publicly to anyone outside the NHS.

Data considered to be potentially identifiable - for example where a patient in a small town has a rare disease - will only be released to approved organisations for the specific purpose of benefiting the health and social care system.

NHS England plans to make this “amber” data available to organisations outside the NHS, such as medical charities, think-tanks, data analytics companies and universities.

Private firms such as pharmaceutical companies might also be able to obtain the data.

Geraint Lewis, chief data officer of the NHS, has said officials believe it “would be wrong to exclude private companies simply on ideological grounds”.

He said: “Instead, the test should be how the company wants to use the data to improve NHS care.”

Two polls for the Medical Protection Society showed most patients have not yet received leaflets explaining the system and GPs fear patients will not be informed enough about opting out.

Of 1,400 members of the public, 67% have not received the leaflet from NHS England explaining the new system and 45% did not understand care.data from what they have read or heard.

A separate MPS survey of more than 600 GPs showed 80% felt they did not have a good understanding of how patient data would be used.

 

Readers' comments (3)

  • This is extremely serious: I contacted my GP to express my concern and to remind them they did not have my consent to share any of my information with anyone. I'm still waiting for my reply.

    Unsuitable or offensive?

  • michael stone

    This has been much-discussed in the media of late. A very dubious argument, is being used to try and counter 'but it would be possible to discover people's identity by cross-referencing different data sets' - the response is 'that is illegal' (okay, true) 'so it won't happen' (not true at all - lots of things which are illegal, nonetheless happen !).

    I strongly see the argument for the 'linked data sets' about patients and their clinical treatments and outcomes' [as being incredibly useful for health research] - but ONLY if they can make anonymity very close to 100% certain.

    Unsuitable or offensive?

  • tinkerbell

    sharing your medical data with private sector and then finding it's sold off and then finding private insurance sky rockets for those with pre-existing conditions or you can't get private health insurance because you are not 'cherry picked'. Profit before care. It's a minefield, otherwise what could possibly go wrong?

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