There is good reason to be awed by NHS ambitions to gather the nation’s medical data electronically into a digital Domesday Book, but also cause to pause.
Why isn’t more priority being given to making the same information available electronically to patients, who might be said to have a prior claim, for free?
Evidence from a study in the US suggests that those on the receiving end of healthcare welcome having the access, and that clinical outcomes improve.
The Open Notes study involving 105 US doctors and published in 2012 found that 87% of patients allowed to look at their doctor’s notes did so at least once. The vast majority, 78%, said it helped them stick to treatment.
Despite concerns from all sides, 99% of patients wanted the project to continue. Significantly, none of the doctors taking part have yet opted out.
Technology is available to give the same sort of access digitally in the UK, and, in the case of hospitals, it is usually right by the bed already.
Nearly everyone in a ward has a television. What they may not know is that the technology delivering Game of Thrones can often do a lot more, such as instant access to medical notes, x-rays or scans, dietary advice and guidance about their condition. If only clinicians could be persuaded to use it.
Their failure to do so is clashing with a public expectation, which is encouraged by health secretary Jeremy Hunt, to see patient notes, both as a matter of democratic decency and to help recovery.
But this is not just about patients. The bedside systems have the potential to save nurses up to 25% of their time, freeing them from administrative work for tasks that often get sidelined.
They help reduce food wastage, estimated to cost the NHS £27m a year, by more accurately matching supply to demand; and they ensure that when beds become free, everyone knows it. In Great Ormond Street children’s hospital the systems are even used for school work.
A suspicion is that the main reason why patients still rarely see their notes, offline or online, is cultural. Some hospital managers still think too much access raises too many awkward questions.
Doctors and nurses would start to sanitise their language, goes the argument, fearing repercussions which could jeopardise treatment.
This is a false concern. Bedside systems have filters that allow clinicians access to information for their eyes only. There is no need to fear making frank observations – for example, that a patient has a fabricated illness or is “difficult”.
Unfortunately, the public sector in the UK has had an unhappy relationship with software, as a litany of stories about overspending and under delivery testify. Perhaps it just seems safer to use the ones by the beds for entertainment?
As a result, it is almost unsettling when the NHS cheerfully announces a ground-breaking gathering of patient data, and yet can still be inconvenienced by the arguably simpler task of allowing electronic access to the patients themselves.
While not every patient will want data, plenty will. Many are familiar and comfortable with what technology can offer. Why should they be denied it by their own healthcare provider – especially when others are being allowed to buy it?
Jeremy Hunt wrote recently that better data means better care. Better access to data means the same, as the Open Notes study found.
The current under-use of bedside computer systems by most NHS trusts is like owning a smartphone, but only using it to make calls: fine, but rather a waste.