Concern over the government’s plans to acquire the nation’s GP held patient records reaches a state of sublime confusion. The government has directed NHS Digital to start taking medical records from GPs in England and Wales from 1 September 2021. This is with a view to creating a central database of pseudonymised patient data. This is their second attempt to do so. The first attempt, in 2014, was abandoned. But why was it abandoned, and why are they trying again?
Which data is affected?
According to the website medConfidential, the following data will be collected:
- “…diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments, including information about physical, mental and sexual health” (more details)
- “… sex, ethnicity and sexual orientation”
- “…staff who have treated patients”
What is the purpose of NHS Digital taking patient records?
And according to Polly Toynbee in The Guardian, they’re doing so because it’s a very good idea. As she says, “The NHS has the world’s richest store of data on patients – a treasure trove for researchers – as most other counties lack such a unified system”. Also, such data is already collected in Scotland, and no one appears to mind. Cynics might suggest that this is because Scotland’s health service is not controlled by English Tories, whose record on integrity and transparency is not the best. Which, as Toynbee herself acknowledges, is where the problem lies.
Marina Hyde, also in The Guardian, points out that, when the government tried to gather data in 2014, “a ragtag band of privacy campaigners, worried doctors and MPs like David Davis campaigned their arses off, meaning that there was public debate and enough people learned about it in time to opt out.” The scheme, she says, therefore collapsed.
Can you opt out?
There are two forms of opt-out. As medConfidential makes clear, only the one known as ‘type 1 opt out’ ensures that all of your data is kept private. A second form of opt-out, available via the ‘national opt-out data page’ offers much more limited protection and still entails your GP delivering your data to NHS Digital.
But medConfidential goes on to point out that if you opted out in 2014, that opt-out still applies. So if enough people opted out in 2014 for the scheme to collapse, and their opt-out is still valid, doesn’t that mean that the new scheme is already sunk? There is a new campaign which is likely only to increase the number of opt-outs. Who is going to get in touch with NHS digital and ask to opt back in again?
Why did the scheme collapse in 2014?
Perhaps, in 2014, the collapse of the scheme was less to do with the actual number of opt-outs and more to do with the government fighting shy of bad publicity. This was the age of the Big Society after all. But Johnson’s government is much more belligerent than Cameron’s. This government floundered over Covid-19, while at the same time announcing that every measure they took was world-beating. If you can’t manage leadership, make do with cognitive dissonance. It worked then, it can work again.
So Johnson will press ahead with this programme regardless. Polly Toynbee is undoubtedly right when she describes this as “a plan of incalculable medical value”, but it will now go ahead with a dataset that is more depleted than would have been the case in 2014. The fact that no effort was made to persuade the public of the value of the scheme should set off alarm bells about what its true underlying purpose is. One aspect of this is the lack of security with which the data is treated. Thus Phil Booth of medConfidential writing in Byline Times ,
“Like the Office for National Statistics and Genomics England, NHS Digital does now have what is known as a ‘safe setting’ – a secure data processing facility with layers of rules, approvals, protections and monitoring. But the government has not made it mandatory for patients’ GP data to only be accessed via this highly secure, heavily audited environment. And so, in all likelihood, NHS Digital’s customers will continue to buy copies.”
Were this government aiming to create something of ‘incalculable medical value’ they might be dissatisfied with the impoverished dataset they are in the process of creating. But they are not. And in the absence of any evidence to the contrary, we must assume that the real purpose of this is to sell data on the open market.
How to opt out
As reported in Yorkshire Bylines:
“There are two kinds of data: GP data and non-GP data. And two different ways to opt-out. For GP data you have to send a form to your GP surgery for every member of your household. For non-GP data it depends whether you have children under 13 – if you do, you have to print off another form and post it to NHS, but if you and any children are 13 or over, you can complete the opt out online.”