Controversial NHS patient database launch postponed


The launch of the NHS's controversial patient data-sharing programme has been postponed for six months following concerns the public didn't know enough about it.

The rollout of the 50 million project was due to start next month, and would allow GPs to share anonymised patient information with hospitals, as well as researchers and private companies.

It is hoped sharing this data will aid medical research, lead to the development of new treatments and ensure standards of care across the NHS are maintained.

Patients will be allowed to opt-out of the scheme, if they do not want their information shared, by writing to their GP.

However, NHS England has now confirmed the project's deployment will be put on hold for six months so patients have more time to get to grips with the scheme, and their opt-out rights.

"To ensure that the concerns 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," an NHS England spokesperson told the BBC.

As reported by IT Pro yesterday, privacy groups have expressed concerns about the scheme, with many fearing the data could be sold on to unscrupulous third parties or combined with other pieces of information to identify patients.

The Royal College of General Practitioners (RCGP) has also aired concerns that not enough has been done to educate patients about the scheme.

In a statement, the RCGP welcomed the postponement of the project, and urged the NHS to use the next six months to ramp up its efforts to educate patients about it.

"We would like to thank NHS England for listening to the concerns of RCGP members and for acting so quickly to announce this delay," Professor Nigel Mathers, the RCGP's honorary secretary professor, said in a statement.

"The extra time will provide it 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."

Nick Pickles, director of privacy group Big Brother Watch, told IT Pro the NHS must find a better way of communicating to patients what the scheme is all about.

"NHS England had one job to make sure the public were properly informed about how their medical records would be used in the scheme. They totally failed to do that, and so a delay is hardly surprising as the legal position was looking increasingly dubious. A junk mail leaflet was never going to be enough and plenty of people, including ourselves, made that clear to NHS England," Pickles said.

"NHS England need to do much, much more to inform the public and that should absolutely now mean writing to every patient personally and including an easy to use opt-out form.

"In future, these sorts of schemes should be done on an opt-in basis and NHS England can ask for our permission, rather than taking it for granted," he added.

Caroline Donnelly is the news and analysis editor of IT Pro and its sister site Cloud Pro, and covers general news, as well as the storage, security, public sector, cloud and Microsoft beats. Caroline has been a member of the IT Pro/Cloud Pro team since March 2012, and has previously worked as a reporter at several B2B publications, including UK channel magazine CRN, and as features writer for local weekly newspaper, The Slough and Windsor Observer. She studied Medical Biochemistry at the University of Leicester and completed a Postgraduate Diploma in Magazine Journalism at PMA Training in 2006.