I'd like to know that too, LilacTree1.
The technology is out there, and more being developed all the time. Until recently our laws –and their enforcement – have been weak, although the eyewatering fines brought in under the GDPR may change that a little.
Pretty much the only way I know not to have personal data about you passed around is, not to have it created in the first place.
When this means not uploading your life to Facebook, the solution is easy enough. But there's an obvious conflict when it comes to essential medical research. I'd love to be part of medical research, but not with these people in charge. I'm gutted that Cummings is back in the driving seat, but of course he's not the only one, so it was merely an illusion of safety while he was gone.
Just as an example, here's the moment Dr Ben Goldacre, previously an enthusiast for the beneficial uses of medical data, realised what was actually going on in 2014.
Care.data is in chaos. It breaks my heart
www.theguardian.com/commentisfree/2014/feb/28/care-data-is-in-chaos
I am embarrassed. Last week I wrote in support of the government's plans to collect and share the medical records of all patients in the NHS, albeit with massive caveats.
[...]
Now it's worse. On Monday, the Health and Social Care Information Centre admitted giving the insurance industry the coded hospital records of millions of patients, pseudonymised, but re-identifiable by anyone with malicious intent, as I explained last week. These were crunched by actuaries into tables showing the likelihood of death depending on various features such as age or disease, to help inform insurance premiums.
[...]
To summarise, a government body handed over parts of my medical records to people I've never met, outside the NHS and medical research community, but it is refusing to tell me what it handed over, or who it gave it to, and the minister is now incorrectly claiming that it never happened anyway.
There are people in my profession who think they can ignore this problem. Some are murmuring that this mess is like MMR, a public misunderstanding to be corrected with better PR. They are wrong: it's like nuclear power. Medical data, rarefied and condensed, presents huge power to do good, but it also presents huge risks. When leaked, it cannot be unleaked; when lost, public trust will take decades to regain.
This breaks my heart. I love big medical datasets, I work on them in my day job, and I can think of a hundred life-saving uses for better ones. But patients' medical records contain secrets, and we owe them our highest protection. Where we use them – and we have used them, as researchers, for decades without a leak – this must be done safely, accountably, and transparently.