Whatever happened to the GP data plan?
Time to hear a positive story about sharing medical records
Remember the scheme to share the GP patient records of 55 million people across England with academic and commercial researchers? Back in the Spring of last year there was an almighty uproar about the plan, with privacy campaigners making a number of charges - that it would create a massive central database which would be a honeypot for hackers, that promises that the data would be anonymised were worthless, and that it was happening behind patients’ backs with no consultation.
An ‘NHS data grab’ was the sober phrase the Guardian used to describe it. The result was that at least a million people took fright, opting out of having their data shared. Then in August the government beat a retreat, putting the whole project on hold pending further consultation.
Now for a number of reasons which I will outline in a moment, I am keen on greater sharing of patient data, so I wanted to know where we stood five months on. Had things moved forward, and did we have a date for this important scheme to go ahead?
After a certain amount of to-ing and fro-ing - navigating the NHS PR universe is always fun - I got a very full answer from a helpful person at NHS Digital. In summary, things have not moved on and no, there isn’t even a date set for GPDPR - the GP Data for Planning and Research programme - to go ahead.
Last summer a health minister set out three tests which had to be passed before the data sharing could happen:
Patients would have to be able to opt out of the scheme at any stage with a guarantee that any data already uploaded would be deleted
The data would have to be accessed only by approved researchers within what’s called a Trusted Research Environment - they couldn’t extract it for use elsewhere.
There would need to be big publicity campaign to explain to people how the scheme worked and how to opt out
As far as I can see, little progress has been made on any of those three objectives so it looks like I won’t be sharing my data any time soon. For years I’ve moaned that it has been far too difficult for me as a patient to get access to my health records - and even for the various health professionals I interact with over my Parkinson’s and my ocular melanoma to share with each other what data they have on me. On one notorious occasion, the High Street optometrist who’d spotted my original eye problem encouraged me to take a picture of a new scan on my phone to show my doctors because she wasn’t allowed to share it with them.
Things have improved - the pandemic seems to have accelerated the sharing of data both across the NHS and with patients.
But what the GPDPR promises is a big opportunity to use data for research that could bring all sorts of benefits, from advances in exploring the roots of conditions like Parkinson’s to better management of future pandemics. That is less likely to happen if millions opt out of the scheme and when the story they are hearing is mostly about the threat to their privacy, who could blame them for doing so?
That is why I was delighted to hear about the group “use MY data”, which campaigns on behalf of patients who like the idea of sharing their medical records. The organisation was born after the catastrophic failure of care.data, the previous attempt to pool GP records which was shelved in 2014.
One of the group’s coordinators Alison Stone told me “use MY data Members want their patient data to be used, to save lives and improve outcomes - for the next generation of patients, recognising they’ve been helped by those who came before them. And they want their voices to be heard in discussions about patient data.”
That includes, of course, the GPDPR project. The group supports the plan in principle while insisting there must be transparency about the use of the data and better communication so that people can make an informed choice.
But how refreshing amidst all the scare stories about the “NHS data grab” to hear a positive narrative about the benefits of data sharing. Now we just need the NHS and the government to communicate that story.
The other group of patients and researchers worth mentioning is UK Biobank. I joined the Biobank at its inception in 2006. It started with a very comprehensive medical examination and health history. Then, over time, I'm invited to complete questionnaires about my physical and mental health, my diet, way of life etc. and from time to time (particularly during the current pandemic) I am sent a kit for taking a small blood sample and sending it back to them (it's very easy and only involves a pin prick). I'm sure one of the lab coats from Biobank can explain what advances can be credited to this mass of data over time, I'm merely one of the lab rats, but happy to play my part.
Delighted to see your support for health data sharing. I became a 'use My data' member when I was frustrated that my hospital consultant couldn't see my GP generated test results on his computer system. The GP and the hospital are in 2 different trust areas. My work around was to take my iPad with the NHS App on it, where I can display my test results, into the Hospital for the consultant to see.
The NHS digital strategy seeks to improve such silly situations but their communications around the subject to reassure patients, as you say, are woeful. I suspect that Ministers/Spads/senior officials fearing negative headlines are holding back the Comms plan. Somebody senior needs to be brave and communicate the benefit of health data sharing.