The Government has been criticised by its own privacy watchdog, the Information Commissioner's Office (ICO), and by the British Medical Association (BMA) over its controversial plan to collect the health data of every person in England on a single database.
The Government has been criticised by its own privacy watchdog, the Information Commissioner's Office (ICO), and by the British Medical Association (BMA) over its controversial plan to collect the health data of every person in England on a single database.
The ICO has accused NHS officials of failing to explain the new scheme in the way they promised to, while the BMA is “deeply concerned†that patients have not been properly told how they can opt-out of the new ‘Big Brother' database'. They have since called for the scheme to be halted until that happens.
Under the £50 million ‘care.data' plan, from April onwards the electronic patient records in every GP practice in England will be gathered and then merged with data from hospitals, social care and community services to create a single anonymised database that can be accessed by researchers from academia and pharmaceutical companies.
But anyone can opt-out of the scheme and leaflets sent to all 22 million households in England last month were supposed to explain the plan. But a BBC survey shows just 45 per cent of people are aware of the scheme.
The BMA, which represents doctors, is “deeply concerned†at this and BMA GPs committee chair Chaand Nagpaul said that the government needs to spend more time educating the public.
“Patients remain inadequately informed about these proposals. We call on the Government to ensure public trust in the system by properly informing the public about care.data before the currently planned data extracts commence, and produce evidence this has been achieved prior to uploads taking place.â€
The ICO is also concerned that NHS England officials have not explained the plan in the way they committed to and has launched an investigation.
An ICO spokesperson told SCMagazineUK.com: “We were shown the communications plan for this. But we don't feel it's been implemented necessarily in the way that we expected.
“The NHS themselves have introduced an opt-out - it's not an opt-out under the Data Protection Act - but even so they're still obliged to let people know about it, and that's what we're looking at.
“Our role is to see whether patients are being made aware of what's happening to their records and the fact that they can opt out if they want to. We feel that the opt-out itself has not been explained as clearly as we were told it would be by NHS officials.â€
The BMA's 17 February call to delay the scheme has been backed by privacy campaigners. Nick Pickles, director of Big Brother Watch, told SCMagazineUK.com via email: “NHS England has failed to properly inform patients and with even GPs still raising questions about what will happen to the information, there is no doubt that this scheme should be delayed.â€
Pickles also pointed out that people can opt out of the scheme by visiting the website https://www.faxyourgp.com/.
The new database has been backed by medical charities, who insist that NHS data sharing will save lives. Last month, charities and medical research organisations including Arthritis Research UK, Cancer Research UK, Diabetes UK, the British Heart Foundation and the Wellcome Trust ran a joint advertising campaign urging people not to opt out.
Meanwhile, NHS England is investigating reports that some people did not receive the information leaflets. A spokesperson said: ‘We are absolutely committed to ensuring the public understands the benefits of this important initiative and also the choices available to them. This is why we provided leaflets and posters to every GP practice in August 2013, have produced a video animation, and have established an information line on 0300 456 3531 for patients to call if they have any questions or concerns.
“We also contracted to deliver a leaflet to every possible household in England during January; we are investigating reports that people did not receive leaflets.â€
The row is a new body blow to the care.data programme, coming just days after the NHS' own risk analysis showed that the database will be vulnerable to hackers and the insider threat (SC Magazine UK, 17 February).
Last month, it was also revealed that the opt-out clause could break the forthcoming new EU-wide data privacy law which may insist people must actively ‘opt-in' before their personal data can be used (SC Magazine UK, 21 January).
