The NHS can use our data to improve services, but it needs to be transparent. Do you feel your personal data should be treated with more respect?
Those of us in England have all seen the information in GP surgeries about GPDPR, yes? No, wait, you probably haven’t, because hardly any of us has set foot in a GP surgery for more than 18 months.
If you’ve seen anything about this project to upload patient data to an NHS digital platform, it was probably on social media, which isn’t known for getting detail and nuance across.
For the record, I’m broadly in favour of this scheme (the full name of which is General Practice Data for Planning and Research). Our concern at Which? is how it has been publicised – on posters in empty GP surgeries and an obscure NHS webpage.
The good news is the scheme has been postponed and won’t go live until tests have shown it’s easy to opt out and that data will be deleted if you want it to be.
Why data sharing can be a good thing
What’s frustrating is that data sharing can be a good thing. This scheme will make pseudonymised data available to researchers and the NHS, meaning they can plan services and develop drugs and treatments. It’s not just in health: if you use antivirus, you’re almost certainly sharing information about what threats your computer encounters, which helps make antivirus better.
Londoners have been tracked through the Tube network via their phones’ wi-fi, helping Transport for London understand how travellers used it.
If you’ve downloaded the Windows 11 beta, you’re sharing data with the developers to help them understand how it behaves on the widest possible range of PCs.
Transparency, privacy and respect
The concern, as always, is transparency and privacy. Too many providers assume it’s OK to help themselves to data, and it’s too often up to us to be eagle-eyed and pounce on things that overstep the mark.
Data about us – the data we create, the data that’s created about us – should be treated with more respect. That way, we might be more inclined to share it for the greater good.
Were you aware of plans by NHS Digital to share medical data from GP records in England? Do you agree that data sharing can have benefits when applied in the correct way?
Share your thoughts in the comments.
This column appears in the October issue of Which? magazine.