The NHS has announced plans to delay its Care.data scheme by six months after concerns were raised about patient privacy.
The decision was made by the Royal College of General Practitioners (RGCP), the British Medical Association (BMA) and Healthwatch who were concerned about sharing patient records through a central database and called for improved public awareness of the implications of the plan.
According to Computer Weekly, the Care.data scheme proposes to upload all patient records from GP surgeries and hospitals into a central database, to be used for medical research by the NHS and private companies. The first upload of data was due to start in April, but patients who wish to opt out must do so before that time or lose their right to withdraw.
Big Brother Watch called the delay a “campaign victory” but said that far from being the end of the issue, it still had significant ongoing concerns regarding the Care.data scheme, both in terms of how patients have been told about what is happening and the long term privacy implications of creating a new database and releasing data that could be used to re-identify patients.
“The simple point is that NHS England failed to properly communicate to patients or GPs what this new database involves, how it affects medical records and what the risks are. The scheme’s benefits are no justification for not properly informing people what will happen and a delay is the right thing to do to maintain public confidence and ensure people have an opportunity to opt-out,” it said in a statement.
“Our medical records contain some of our most private information and any changes to how they are used should not be rushed into. NHS England should now write to patients individually, including an opt-out form, explaining the scheme and allowing people to make an informed choice about what happens to their medical records.
“In future, it should the the norm that these kind of changes are done on an opt-in basis. We expect such a situation would mean a far more thorough effort from NHS England to keep the public informed, while also fulfilling the principle of giving patients control of their medical records.”
An ICO spokesperson told IT Security Guru that they welcomed the changes that will give time for the NHS and other bodies involves to explain the changes to patients.
