NHS Connecting for Health has rewritten its Care Record Guarantee, changing some references to sealed envelopes and clarifying the use of anonymised records for research purposes.
The guarantee, first published in May last year, aims to set out the rules governing information held in the NHS Care Records Service (NCRS). It covers patients’ access to their own records, controls on others’ access, how access will be monitored and policed, options people have to further limit access, access in an emergency, and what happens when someone cannot make decisions for themselves.
The guarantee is produced by CfH’s Care Record Development Board whose chairman Harry Cayton says the main changes introduced in the new version focus on making sure the document is clear and easy to understand following feedback from patients, researchers and clinicians.
He added: “Most of the concerns voiced tended to be about clarity – was it clear enough and could it be misinterpreted?”
The new version drops the promise that “from the outset” the new system will enable patients to control whether information in electronic records made by the organisation providing care is seen elsewhere in the NHS. Instead it promises that the new system “will allow only those involved in your care to have access to records about you from which you can be identified, unless you give your permission or the law allows.”
Cayton said: “Not everything we hoped would be available from the start will be available, in particular the ability to hide from view particular forms of information will not be available in the first instance.”
Feedback received from researchers, in particular the Academy of Medical Sciences, was that the old version of the Care Record Guarantee could have been interpreted very narrowly and restricted use of anonymised records for medical purposes.
The revised version includes a clause that information can be shared if there is “special permission for health or research purposes.”
Other changes to the guarantee make it clear that it does not prevent clinicians from seeking advice from other clinicians when they are caring for someone, or from using patients’ records appropriately in medical education.
Cayton added: “The guarantee is the first time that any government department has set out, as clearly and as simply for the public, how it intends to keep secure their information, and how it intends to use their information for their benefit. If people felt that the guarantee was being breached, they would have a right to complain.
“But it is vital that it remains up to date and relevant to the needs of patients and the public, and we will review regularly to ensure this. That is our commitment.”