The start of a new NHS data-sharing scheme in England involving medical records is being delayed by six months.
Work to start compiling the largely anonymised records on to the Care.data database was meant to start from April.
But NHS England has now decided that will not now happen until the autumn.
The organisation has accepted the communications campaign, which gives people the chance to opt out, needs to be improved.
There has been widespread criticism that the public have been “left in the dark” over the plans amid reports not everyone received the leaflets explaining the project.
The Royal College of GPs, the British Medical Association and patient watchdog Healthwatch England have all voiced concerns in recent weeks.
The central database will involve taking records from GP practices and linking them with hospital records.
What Is Care.Data?
- When it is compiled, Care.data will be a giant database of medical records showing how individuals have been cared for across the GP and hospital sectors.
- Researchers believe the information will be vital in helping them develop new treatments as well as assessing the performance of NHS services.
- The records will be pseudonymised, which means the identifiable data has been taken out. Instead, it will just contain the patient’s age range, gender and area they live in.
- Although, researchers can apply for those safeguards to be lifted in exceptional circumstances, such as during an epidemic. This will need the permission of the health secretary.
Experts say it will enable them to assess diseases, examine new drugs on the market and identify infection outbreaks as well as monitor the performance of the NHS.
To date information has been available about what happens in hospitals, but not what goes on in GP surgeries.
The information made available on the database will be stripped of identifiable data – although it will include the gender, age band and area a patient lives in.
However, concerns have been raised about the prospect of keeping all the information in one place, with campaigners saying that it could lead to privacy problems and data breaches.
There is a proposal – to be discussed next month and backed by NHS England – which could give non-NHS bodies, including private firms, the right to ask for access to the data.
NHS England has organised a mass mail-out to every household in England since the start of the new year, but there have been reports not everyone has received them.
Last week a BBC poll of 860 people found fewer than a third could recall getting them.
An NHS England spokesman said: “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.”
It has not yet been decided how the communications campaign should be built on – some have suggested there should be a high-profile TV and radio advertising campaign.
Dr Chaand Nagpaul, of the British Medical Association, said: “We are pleased that NHS England has listened to the concerns.
The Health-Care Survivor’s Comment
Whilst the announcement of this delay is welcome, it is critical to be aware that the scheme has not yet been defeated.
It is still important that patients exercise their right to opt-out of the sharing of confidential medical records.
However, there is NOT an official form, or central point, through which to opt-out. Instead, every individual patient will have to contact their GP/Family Doctor directly.
Your instructions can, and will, be over-ridden in circumstances, which are, so far, undefined, but not denied.
This Is An Opt-Out System: Any patient who does not actively opt-out, is presumed to have given their consent to be included in the database.
Despite the NHS claiming that data will be ‘largely anonymised’, the data will be made available throughout the NHS as well as to organisations, companies and researchers outside it. Claims of anonymity have already been challenged by David Davis MP, who also revealed that the content of the database will be available to the police.
I believe, George Orwelll could only have had nightmares about such a breach of privacy.