Doctors have promised that patients will remain anonymous. But data protection campaigners have warned that individuals risk being identified and that the notes may be inaccurate.
Health professionals have admitted the ‘care.data’ database could be vulnerable to targets from hackers and criminal networks, but say it is necessary to improve the health service.
In the 1950s health data played a major role in uncovering a link between smoking and lung cancer. More recently, the health data of children with autism born since 1979 in eight UK health districts helped scientists dismiss claims of a link between the MMR jab and autism,
Professor Peter Weissberg, Medical Director at the British Heart Foundation, said: “Locked inside our medical records is a mine of vital information that can help medical scientists make discoveries that can improve patient care and save lives.
“With the right safeguards in place to protect patient confidentiality this new system will be of enormous benefit to patients and help reduce the burden of heart disease in the future.
“I don’t think anyone would say there is not a risk. But you can walk into a hospital and pick up notes at any time. People don’t because they are of very limited use outside of medical research. The benefits are enormous and the risks are small.”
Professor Liam Smeeth of the London School of Hygiene and Tropical Medicine added:
“People’s concerns are understandable. Even if they have nothing that is embarrassing in their records they still may not want it to be seen by anyone other than their medics.
“I can’t guarantee there won’t be a single slip, but the risk is tiny. This is not about individual people.
“Nobody can sit here and guarantee that medical records are completely immune from criminal hacking. I can’t guarantee that these are 100 per cent free from criminal activity.
“But this is data that’s absolutely necessary to keep NHS up to date with the times. Not opting out is important.”
In the past experts have warned that patients may be deterred from being frank with their doctors if they feel their records will be shared elsewhere.
When a local scheme to share GP information was set up in Oxford low-income mothers refused to talk to GPs about post-natal depression because they were worried that it would get back to social services.
Dr Sarah Wollosten, GP and conservative MP told a fringe meeting at the Tory Party Conference that medical records may contain errors, both mistakes consisting of other people’s notes, errors in recording and pejorative remarks.
Julia Manning of thinktank 2020health said: “Such is the secrecy surrounding our medical records, most of us have never seen them.
“Only occasionally are we made aware that this means they could have significant errors in them.
“Stories occasionally come to light in the press of people denied insurance payouts for a condition they didn’t know they had or for a condition that they didn’t have but their records say they did.
“People’s private medical information should not be uploaded to a national database until they are fully informed of process and confident their personal information is correct.”
The group medConfidential are encouraging patients to opt out.
Phil Booth of medconfidential said: “It’s no surprise NHS England has engaged charities to promote its new scheme, while playing down the non-medical, non-research organisations and companies outside the NHS which will also be given access.
“Research might be one of the more palatable uses for the deeply personal information that is to be taken, but it’s far from the only one.
“Much as researchers and others might want our health data, forcing GPs to upload patients’ details not only contravenes research ethics – riding roughshod over consent – it risks undermining the trust between doctor and patient essential to medical care.
“It’s everyone’s right to keep their family’s medical records confidential, but the only way you can do that now is to opt out. Opting out doesn’t stop you volunteering for properly-run research studies.”
However professor Sir John Tooke, President of the Academy of Medical Sciences said the risks are low when compared with the benefits.
“For the majority of medical research projects the risk of disclosure of sensitive information is extremely low.
“On the other hand, the risks to public health of impeding such research are potentially very large.”
And many charities have agreed.
Sharmila Nebhrajani, Chief Executive of the Association of Medical Research Charities said: “I believe people will be willing to make the public spirited act of sharing their medical records with researchers as long as they are confident that their data will be treated with care.”
Dr Harpul Kumar, Chief Executive of Cancer Research UK said: “Advances in medical research rely on access to the records of patients. The UK is in a unique position because it has more comprehensive data that anywhere else in the world.”
Cancer survivor Richard Stephens said: “As someone who has survived two cancers, I have seen first hand how our health records can help improve people’s lives.
“I might not be alive today if researchers had not been able to access the data in the health records of other cancer patients to produce the most effective treatments and the best care for me, and by making my own records available to researchers I know I am helping other patients in the future.”
Sarah Knapton, Telegraph