" There may be a point at which it really does make sense for assumed – but also informed – consent to be the default model for sharing medical data "

It's not sufficient (and never will be) to merely be informed that some person or agency is doing something you disapprove of or wish to resist. If there is no choice, there are no rights.

There are typically two alternative data sharing scenarios. Either a proposal is so draconian that a majority will want to opt out, whereupon it shouldn't be implemented, or only a small minority will want to opt out, whereupon loss of that data should not seriously affect statistical results. In either case there's no justification for sidestepping personal choice.

What policy makers tend to forget is that every issue is multi-facetted. Focusing on an apparent advantage of one aspect commonly leads to unexpected adverse consequences. But those consequences rarely affect the policy makers directly, so they are frequently ignored.

>What policy makers tend to forget is that every issue is multi-facetted.

I don't think our dear leaders forget issues are multifaceted, I think they just like to steam roller over any contrary views to get whatever outcome they have want.

Our Dear Leaders are multifaceted.

(Two = Multi)

Why is Germany described as a "collectivist country" and Brazil as an "individualistic country" in the opening paragraph?

The "individualism" bar chart [1]here shows UK and Germany as countries scoring highly in individualism, and Singapore and Brazil substantially lower.

"Brazil has a score of 38 which means that in this country people from birth onwards are integrated into strong, cohesive groups (especially represented by the extended family; including uncles, aunts, grandparents and cousins) which continues protecting its members in exchange for loyalty."

[1] https://www.hofstede-insights.com/country-comparison/brazil,germany,singapore,the-uk/

I would say that Germans (and Singaporeans) have greater trust in their government's decisions than UK or Brazilian folks. With good reason.

There may well be smart people in NHS Digital but I am fairly sure none of them are policy makers, or even listened to.

Relying on a huge organisation like the NHS to safeguard anonymised data that is reversible when they can't even develop and operate an acceptable track and trace system regardless off vast sums of money and hordes of consultants tells me I couldn't trust them at all.

I'm sure there are some pretty smart people who are policy makers at NHS Digital. They just also happen to be unscrupulous bast*rds.

Don't fall into the trap that people who we disagree with are stupid.

These scientists wriggle like eels to get big pharma filthy hands on our data.

Gaslighting, defying logic and blinded by its own greed and self-importance.

How people can respect scientific community when they lost touch with what they are for?

The position of authority will only work for so long, once it wears off, the "I am a scientist" is going to mean nothing.

Years ago I opted out of having my medical records shared beyond the local surgery. Recently I find that the hospital, the duty doctor that 111 put me in touch with, all have access to my medical records, they can read my prescriptions, tell me the results of blood tests, etc. So much NHS regard for patient opt-out.

I was wrong to have opted out, for the local sharing of information is very much to my advantage. However, this shows how poor and meaningless privacy is to the NHS and our choice matters not a fig to them.

"our choice matters not a fig to them"

Which is better if you are the government?

A. Create an opt-out system, and enroll the ones who choose to opt-out. Or ...

B. Create an opt-in system, and enroll the ones who did not choose to opt-in.

I say "A" is clearly better for the government, because they can claim the optee missed a step, or missed a deadline, or it was a clerical error, or whatever. Whereas in "B" the only possible reasons are government incompetence or government malfeasance.

Difficult (for me at least) to fathom how someone who specifically points out the potentially lethal results of data of/about Afghanis collected under the previous regime falling into the hands of the Taliban and still comes the conclusion "Not Yet" rather than "Not Ever" in answer to the question being polled.

You made a sort of half assed fake counter argument there, Joe, a sort of "sure its great but". Oh fook off, transparently false attempt to argue this.

The plan: take "aggregate" data, build outcome models from that data, the models overrule the doctors decision, NHS saves money by not paying for expensive procedures that the model says it doesn't need to pay for, even if the doctor says it does.

The problems:

They'll just end up paying data modellers like Palantir instead.

The doctor knows better than generic model, second guessing doctors prior decisions.

That data gets used for uses it was never intended for. Stuff like: "Why should insurance company cover people living unhealthy lives? [+play one person off against another], they get the data anyway, lets pass identifiers, but just for this particular case and not for other cases....".

Stuff like "wouldn't it be great if the police had a list of everyone who might be a drug user, we have that data anyway, its just another query, and the police can already RIPA query that database anyway, so lets make it official".

Stuff like, "if we cancel this health policy, how many people of [opposition demographic] do we kill?". The analysis the Republicans were running when trying to cancel Obamacare and keep all the Republicans on board. Hey, sure we kill 60,000 but they're mostly Democrats, here, look at our data models.

Stuff that causes the basic purpose of healthcare to be subverted from caring for health, and instead becomes about what gains [group] can get from mining that PRIVATE DATA.

Germany, you've never experienced German healthcare clearly, it's expensive and fragmented, and try to get a cancer specialist and you run around one polyclinic to another to get the bits and pieces of healthcare needed. A clinic here for the CT scan, a clinic there for the cancer specialist, a clinic for the medicine, run run run. Chase chase chase.

Germany life expectancy, 81.57 years, UK 81.52 years, no difference. All that extra money (and you claim data) makes no difference.

If German aggregate data is so useful, WHY NOT USE THAT? They are a similar european demographic complete with a Lidl food diet and similar health care. If *anonymous* aggregate data is so useful, then a similar *anonymous* dataset will be fine. Germany: insanely overpriced, inefficient system, overfunded by taxes. The taxes are so high, 50% of the people cannot afford to move out from their mothers home. Clearly an out of balance economy there.

Singapore, you get that its 50% subsidy for a kids visit and yet still hundreds of dollars, for something as trivial as a pulled elbow? Or you can live with the pulled elbow if you cannot afford it. They have nothing, nobody goes to Singapore for their hospital treatments, they head to Thailand. Singapore: all smoke and mirrors hyper inflated economy, pretends to be hi-tech run by data and robots and is actually run by cheap labour from neighboring Asian countries. Why not just say, you're data driven and run by robots and import Polish labor like before, if you want the smoke and mirrors economy?

You hold up two of the crappiest overpriced systems available as models to be pursued.

UK has a Pharma industry because it has NHS and a stable marketplace. If you strip billions from NHS, you will lose your Pharma industry.

It's private data, you do not get to argue the pros and cons of accessing people's private data, without them being in the argument. THEY decide on a case by case basis whether YOU can use THEIR private data.

Opt in, or undermine healthcare.

"Collectivist countries such as Germany and Singapore are seen as having better served their citizens during the pandemic than more individualistic societies such as the US, Brazil, or the UK."

Really? let's spin that the other way:

Individualistic societies such as New Zealand and Israel are seen as having better served their citizens during the pandemic than more collectivist countries such as Russia and North Korea."

So really, mate, there wasn't even a straw argument for you to knock down. Kudos for knocking it down anyway, though.