England’s NHS plans to share patient records with third parties

There is something very wrong with the attitude towards health-related personal data in the UK lately. If you talk to real clinical professionals like doctors and nurses, they tend to be very aware of privacy as a matter of professional ethics. But the people making a lot of the policies and setting up a lot of the services that handle this sensitive data aren't generally the clinical professionals, they're more likely administrative staff and managers, whose priorities are not necessarily so constrained and who may not have the technical knowledge to understand the implications of what they are doing.

A case in point: some dentists in our area are now asking for a comprehensive medical questionnaire (far more than just dental history or medical conditions that might affect appropriate dental treatment) to be completed for any new patient, and then emailed to them. There's not even a pretence of acceptable security and privacy protections. With some other dentists, they ask you to use an online system to send them similar information, and that system is run by a commercial entity not based in this country.

Given how badly the figures right at the top of the health service and the members of the Government who are responsible for it dropped the ball when it came to privacy and COVID apps, it's hard to have much faith in them to properly operate centralised systems that hold substantial information about everyone for very generic-sounding purposes like "planning" and "research".

The fact that this particular opt-out can be completed easily online by adults yet requires a parent or guardian to jump through hoops involving filling in PDF forms in order to opt out of sharing sensitive data about a child says a lot about the level of ethics involved here, and none of it is good.

As a final observation, nothing about opting out of this kind of generic, large-scale system precludes participating in legitimate research conducted with appropriate safeguards and ethical standards. Doctors in a certain field may be working with a research group to investigate a particular condition in their field and its treatment, and can forward an invitation to any of their patients who might have that condition explaining the research and asking if the patient would be willing to participate in the research. I've seen one of these, and the information provided was very clear about exactly what data would be shared, what it would be used for, who would have access to it and with what safeguards to prevent unauthorised access, arrangements for destroying it after the research had been completed -- basically everything you'd hope a responsible organisation doing legitimate medical research would be careful about. So the kind of useful research where someone privacy-conscious might still choose to participate for the greater good isn't necessarily undermined by opting out of generic data-sharing consents.

It seems the NHS will still be able to identify patients. FTA:

"Data that directly identifies patients will be replaced with unique codes in the new data set, but the NHS will hold the keys to unlock the codes “in certain circumstances, and where there is a valid legal reason”, according to its website. "

It's not stupid. They know what they're doing. Any more than driving all the nurses to quit is stupid.

To counter your devils advocate, universities within the UK which perform the most cutting edge research in this specific field are already closely linked to specialist hospitals, and can obtain the kind of data they need on a targeted and explicitly consensual basis. The fallacy that more data inherently leads to better ML affords poorer quality research, and explainability often lags behind in these cases.

Its hard to compare NLP (such as pretrained transformer models) to medical ML because there are real and potentially fatal implications to misdiagnosis. The focus should be on small scale and explainable ML, not brute forcing patterns across large populations (which is more effective for insurance companies than clinicians). FWIW, I'm a massive fan of the potential of CV in diagnosis, and in aiding spotting abnormalities early, but I think the proposed opening up of data is absolutely the wrong way to see innovation in this field.