@elomatreb @switchingsocial It's my opinion.

If you think it's manipulative of me to state my opinion, too bad.

@elomatreb @switchingsocial Truth hurts?

It's not as if these research programmes aren't carefully monitored and under strict ethical guidelines - the UK is crap at many things, but in my experience red tape is not one of them.

I'm not saying people shouldn't opt out, but I am saying they should be aware that there are implicit costs to everyone, to doing so.

I am perfectly OK with people Having Feelings as they weigh the pros and cons of this kind of decision.

It's still their choice.

@HerraBRE

Can you give me a reason why medical researchers need to see non-anonymised data?

@switchingsocial Go ask a researcher.

@HerraBRE

If this Google thing had never happened I would be on your side, in principle.

But the Google thing did happen, and given that situation, the burden is on researchers to explain why they need my name, address, phone number etc etc as well as my medical records.

@HerraBRE

The NHS's data-sharing deal with Google actually broke UK law:

https://www.cnbc.com/2017/07/03/google-deepmind-nhs-deal-health-data-illegal-ico-says.html

...so no, I don't think this is carefully monitored or under strict ethical guidelines.

@switchingsocial Aside from knee-jerk Google hate and "concerns", I don't actually see any problems in the linked article: https://www.theguardian.com/technology/2016/may/04/google-deepmind-access-healthcare-data-patients

Did anything bad actually happen, or are people just really uncomfortable with Google's involvement?

@HerraBRE

Yes, they broke the law:

https://www.cnbc.com/2017/07/03/google-deepmind-nhs-deal-health-data-illegal-ico-says.html

@switchingsocial Thanks for the link, I'll go read it.

So... if they're breaking the law anyway, why do you think the consent form makes a difference? I mean if they're not following the rules anyway....?

Do you want to hobble future research as punishment? Is that reasonable?

@HerraBRE

So what you're saying is:

-Don't opt out, because the NHS would never break privacy laws

(reads about NHS breaking privacy laws)

-Don't opt out, because the NHS will just break privacy laws anyway

?

@switchingsocial I said none of those things.

I said that opting out has a cost for society, in the form of adding a constraint to researchers.

I asked people to consider that before blindly clicking the buttons. That is all.

I stand by that, no matter what mistakes the NHS or other similar orgs may have made in the past.

Humans make mistakes, and that doesn't mean there was malice nor does it mean anyone was harmed. I hope the mistakes are corrected and I have faith most of them will be.

@elomatreb @switchingsocial I appreciate that you feel that way.

I estimate the costs differently, and my phrasing reflected that. People reading this thread are smart, they can read all these points of view and make up their own minds.

Agree to disagree, move on! 😄

@HerraBRE

I appreciate the point you're making, but there are specific reasons why I'm sharing the link:

-If you read the details at that link, it only covers data where your own personal details are visible. Anonymised data is not affected by the opt out.

-I'm not sure why researchers would need to see my name and contact details on my data.

-The NHS has recently been giving vast amounts of personal data to Google without consent: https://www.theguardian.com/technology/2016/may/04/google-deepmind-access-healthcare-data-patients

@HerraBRE @switchingsocial if they had decoupled data sharing from that which they sell to pharmaceutical companies who then sell their wares back at a significant premium then I'd have more sympathy for this view.

The truth is that it's opt-in by default, and the number of people taking the time to actually opt-out will be a tiny minority of the population because most of us (myself included!) don't know our NHS numbers & would have to contact our GP to ask first!

@bobstechsite

I know this wasn't your main point, but just in case anyone needs to find their NHS number, it's on all your prescriptions and all letters from the NHS (GPs, hospitals etc).

@switchingsocial indeed, I did note this when reading the webpages.

In my case I've only seen a GP once in the last 5 years and don't have prescriptions. (I'm only registered to the right surgery because my last employer made me get a doctor's note in January this year)

There's a not small number of people like me who have little contact with healthcare professionals who'd probably have to make an extra effort to find out the details we need to opt-out.