I'm diabetic. I'd rather risk my shared health data being stolen than a double amputation

Welcome to the latest Register Debate in which writers and experts go head to head on technology topics, and you – the reader – choose the winning argument. The format is simple: we propose a motion, the arguments for the motion will run this Monday and Wednesday, and the arguments against on Tuesday and Thursday. During the …

[John Robson]

The risk depends on your countries health system, and how much you think you can rely on it staying as it is.

Consent for a university to look at drug/condition correlation - fine.

Consent for insurance company to do the same - not ok. Healthcare should not cost more because you have been unlucky… the ill health is cost enough.

[And talking of rare conditions, my consultants reckon I was probably case ~22 globally, of course I don’t count in those stats since the test wasn’t administered early enough to be convincing, but it’s still going to be a pretty small number]

[big_D]

I like the planned eAkte (electronic patient folder) in Germany. I'll get a request from a doctor or a researcher who wants access to information. I can decide if they get access, and what level of access.

Diabetes research? Ok, blood values etc. but not my prostate scan or operations for various things, for example.

If I go to a new doctor or specialist at the moment, I have to sign a release form that they can order my information from other doctors, which takes a while. With the new system, I can give the doctor access on the spot, and access to what is relevant.

[Haff]

how do you determine what information is important or relevant?

and why would you not want a medical professional who is treating you not to see all of your history?

[martyn.hare]

Here’s why you might NOT want to disclose anything at all

During the COVID pandemic, doctors would discriminate based on health history to decide who did NOT get a ventilator to maximise total survivor counts at the cost of people who effectively had comorbidites. Italian doctors admitted this openly and honestly to UK news rooms.

People with histories of alcoholism would be less likely to receive liver transplants compared to individuals with healthier outcomes when there is a shortage of supply. Boards review cases and decide who is more deserving.

That is before we consider what the police do when they get hold of data….

Relevant data should exist on a device you carry on your person at all times, not necessarily held on Microsoft’s cloud (NHS) or be slurped by Google servers (Deepmind). We need also need ways to detect and allow for proper private prosecutions for abuse of data, not just financial compensation.

[Alan_Peery]

Re: Here’s why you might NOT want to disclose anything at all

Your first two paragraphs are exactly what I hope is happening, but you seem to regard it with dread. The doctors are maximizing good for the greatest number within limited resources.

Don't like the results? Then work to increase the resources.

[TechnicalVault]

Give me a better alternative

What those doctors were doing in Italy was standard triage, when resources are limited, prioritise the patient most likely to survive. Healthy 30 year old gets the ventilator over the 20 year old with CF lung scarring because one is much more likely to survive than the other. Given the limited time to make the decision and lack of resources to carry out deep health assessments the best option is to use existing data. It's brutal but given you implicitly condemned it, I would like you to present a fairer alternative?

[big_D]

It is yet released, but I'm guessing the app will list the information the doctor wants to have and you can approve or deny each piece/group of information, or open up everything.

[big_D]

Does my proctologist really need information about my mental health treatment or my dental history?

[Anonymous Coward]

If you keep inserting object where they don't belog, I'd say you have a mental problem.

[John Robson]

They might need some of the drug records from either of those to determine suitable treatment options.

[Mage]

False choice

It's not the proposed sharing of data vs cures.

The data ultimately will be for marketing.

[John Robson]

Re: False choice

It's not even marketing that worries me, it's being denied treatment.

But there is no reason not to have a setup whereby GPs get a request in standardised form to select patient data, and for that to get sent out to patients with a standardised cover form (so that I can say "always say yes to a university that is looking for data on <insert rare condition>" and "always say no to insurance companies"). Then I can get a weekly/monthly list of places that want access, and what to and I can say yes/no to each.

[Jim Birch]

Re: False choice

Health data is used for all sorts of things, some bad some good.

Fact: Medical research uses health data.

You might say it is not worth the risk but have you actually done an evaluation?

[TechnicalVault]

Re: False choice

Unfortunately you are wrong, someone might use them for marketing in aggregate (how much demand is there for this drug) but they really are useful to researchers.

I have already worked with EHR in scientific research and they are a treasure trove because they allow us to reduce the amount of confounding variables people don't know to tell us about when we're researching. You can recruit patients with rare diseases without knowing who they are by sending a message to their GP asking them to pass on the invite. You can perform longitudinal studies of huge groups of patients without the recruitment ascertainment bias you get from regular studies. Basically don't knock it till you've tried it.

[Jim Birch]

In Australia we have a mixed public and private health service. Public is available to all but may have lower quality or availability, though not always. Private insurers aren't allowed to change rates based on medical history. This means individual Australian health records don't have a commercial value for insurers. Aggregate information remains useful for a variety of purposes.

[John Robson]

"Private insurers aren't allowed to change rates based on medical history." Yet

[Anonymous Coward]

If I were in the same position as you, then yes, anyone and everyone who might possibly come up with a medical advance could have my data even if it were to come too late for me.

But with respect, that's not what the debate is about. That's you allowing your data to be used whether or not you have explicitly opted-in. What you've not said is whether you believe that others with similar conditions to yourself should have their data used even if they haven't agreed (merely failed to disagree).

Not wishing to speak on behalf of everyone, but I'd suggest the majority of people with a particular set of heath conditions would be happy to share their medical data with researchers and even companies who are explicitly investigating those conditions. But again, that's not what this debate is about. This is - perhaps slightly simplistically - about all your, and everyone else's, medical data being available to anyone for any purpose if you fail to opt out.

[Anonymous Coward]

Respectfully

'I have no truck with anyone telling me, from the position of perfect health, what is in my interests'

Neither do I. Touch wood, my interaction with Health professionals is limited - though that is not the point.

That argument could be made on mandating vaccines in the US and other countries- but there you would be lambasted as an anti-vaxer.

But again, its not the debate.

'But the vast majority of us don’t bother to argue, bought off by getting free access to a digital world. We don’t, for the most part, anonymise ourselves with VPNs nor opt out of marketing cookies.'

A significant number of people do make the choice when given it. I routinely do. As do many others. I have read up on my rights and thus have informed myself.

You have obviously expressed an informed consent in having your data shared with whomever wants it and can make a case for it.

The question is - should that consent be assumed? I think not.

[Ken Rennoldson]

Re: Respectfully

There is a point about who the data goes to. As one respondent put it: Universities - good, Insurance Companies - DoublePlusUngood (I paraphrase a tad!).

So forced sharing with folk who are interested (and can only be interested) in it as bulk, anonymous data is I think justifiable. But it must be kept out of the hands of anyone with an interest in de-identifying it and would very happy for swingeing fines to fall on organisations that did that - or obtained the results. Such as insurance companies, employers etc. Not sure about which side of the fence I would put big pharma, perhaps I would be cautious and start them off on the wrong side.

I'm not saying there aren't flaws in this argument, but could there be a middle way through here?

[Neil Barnes]

Re: Respectfully

I agree one hundred percent: pooling health data will improve medical outcomes (I speak as one with a number of ongoing health issues) but the problem is it looks like it's all or nothing.

"Mr Barnes, would you like us to submit your medical data to this company for the express purpose of researching that condition? It will be fully anonymised and will go no further than the research analysis."

Well, yes, maybe... but wait, isn't that company part of a group which is a wholly owned subsidiary of an insurance company? I don't really want to tell *anything* to an insurance company. Or indeed, start receiving adverts for that stunning new medical magazine "So You Think You've Got Problems".

The very companies who are doing the research are likely to be sponsored by the very people I don't want to talk to.

[AMBxx]

Re: Respectfully

No such thing as genuinely anonymous health data. We all have a unique breadcrumb trail. If even part of that is public, we can easily be identified within the anonymous data.

This is what converted David Davis to the data protection cause - his health data is easily identified as he is one of very few people to have broken their nose 5 times. No reason to hide the nose breaking, but who knows what else is in his health record that he'd want to keep private.

[John Robson]

Re: Respectfully

Indeed, and for those with relatively rare conditions it becomes rather trivial to deduce who is who.

[Richard Jones 1]

Re: Respectfully

Again with resect, my wife has serious issues with cancer(s) that may, or may not, be treatable. Our daughters, both, have rare blood disorders.

Okay, we are perhaps not typical as a family.

The insurance company's agreement is specious. Apply for any form of insurance with a life or health element, and you will be asked to self incriminate yourself by declaring all known health conditions. I would sling our data forward for medical analysis in a heartbeat. I know it will probably not help us, but someone somewhere may one day unlock the secrets to treatments for these conditions, if, and only if research can proceed and not be blocked by largely false arguments about insurance.

Has anyone read the stories of insurance companies investigating and rejecting claims because material fact were withheld? The results are not pretty, make a claim, and you will be investigated and must give the company full access to your records or no payout - you may well get no payout anyway if you have been hiding something.

[big_D]

Re: Respectfully

Exactly, and I'd say a vast majority still aren't clear about what they are giving up, when they use free online services or free wi-fi, hey, its free!

The technicalities of what is happening are so complex that even IT professionals and lawyers struggle to get to the bottom of exactly what is going on.

[alain williams]

What is the cost & to whom ?

To this guy the cost of his data being abused is a small one compared to the potential benefit of a treatment being found that saves his life.

To someone who illegally re-identifies his data which is then sold there is money to be made but there is little cost if this act is found; maybe at worse a fine for his corporation. If there were large personal fines then someone who re-identifies data might not do this. Part of the problem is that most re-identification is hidden behind corporate doors.

[Anonymous Coward]

(and doing what with it?)

I wish you well with your type-1 diabetes but ML/AI/Data sharing is not going to help. Proper funded research will. The data they take will be used by insurance companies.

[Evil Scot]

Re: (and doing what with it?)

Exactly,

This particular use case could basically be summed up as..

Hey GP practice we will give you $$$$ if you can find xx individuals meeting yy conditions who are WILLING to PARTICIPATE in a study.

[andy the pessimist]

Re: (and doing what with it?)

Diabetic nurses and GPS will not look at this data. They look at my blood glucose spreadsheet and say on you must be in IT. Hospitals are the same. If a hospital was doing research they can have the data confidentially. Otherwise they are not getting it.

[Evil Scot]

Re: (and doing what with it?)

GPs yes.

If He listened to me. I was saying I wanted to go on medication which worked for me. The only issue I had was that higher sugar in the urine had its complications. Plastic surgery fixed that.

[Wim Ton]

Re: (and doing what with it?)

AFAIK, the NHS cannot refuse to insure you based on your medical condition. Same in Switzerland and the Netherlands for the basic package.

[Graham Dawson]

Re: (and doing what with it?)

Health insurance isn't the issue. Imagine your car insurance having free access to your medical information and randomly bumping up your premiums because their oh-so-clever data analytics have decided that a slight elevation in your blood pressure puts you into a high risk category.

[Yet Another Anonymous coward]

Re: (and doing what with it?)

Or you not being able to go to college because the bank doesn't think your a good loan risk based on your DNA.

[Anonymous Coward]

@Yet Another Anonymous coward - Re: (and doing what with it?)

Gattaca movie.

[short a sandwich]

Re: (and doing what with it?)

There's a "currently" missing between cannot and NHS. Legislation should always be made on the basis of what is the worst that could happen in future.

[Filippo]

There has to be a way to efficiently share patient data with researchers, but not with insurers and marketers. If there isn't, we really ought to invent it.

[Ordinary Donkey]

Unfortunately, the incentives for governments like the British one are to offer an all-or-nothing deal, because without the sweetener of life saving nobody would accept the harms.

[vtcodger]

I'm with you

I'm a type 2 diabetic with (currently) well controlled blood glucose. Having gone through a number of years of trying to control blood glucose with insulin before discovering that I'm lucky enough to be able to control my blood glucose levels pretty well with Metformin and diet, I have nothing but sympathy for those of you that need supplementary insulin. I found controlling blood glucose with insulin and a blood glucose meter to be extraordinarily difficult.

But that's sort of beside the point. The issue is should my medical data be available to drug companies and medical researchers? Of course it should. I'd strongly prefer it be anonymized Insurance companies? For population studies and other meta-analyses? Of course. For setting my personal policy rates. Probably not. But there would seem to be some room for discussion there. Should it be available to scumbag marketers (is there any other kind of marketer?) Hell no. And speaking only for myself, I'm in favor of jail time -- lots of it -- for those marketing types who will inevitably try to pierce the veil of anonymity.

[Evil Scot]

Re: I'm with you

But there is bugger all that data sharing can do for type 2. A full on patient present study is what is needed.

If there was a tablet which could reduce the stranglehold on my pancreas I would be interested. Currently meds like Metformin don't help a great deal.

Researchers pay my practice to get me onboard.

[vtcodger]

Re: I'm with you

But there is bugger all that data sharing can do for type 2

Perhaps not. On the other hand, there is are researchers who contend that "Type 2" is very likely a heterogenous group of people with differing glucose handling characteristics who need different (and possibly in some cases no) treatments and that the way to sort THAT out is to assemble Continuous Glucose Monitoring data from "Type 2 diabetics" plus a reasonable number of purportedly "Normal" individuals. The contention is that once there is sufficient data. a spectrum of conditions and treatment approaches may well emerge. Possible result -- better (and cheaper) treatments. Insulin is expensive. And somewhat dangerous.

Wishful thinking? Perhaps. But how can one tell without data?

[Milo1970]

Re: I'm with you

Not wishful thinking at all. This is entirely correct.

[Evil Scot]

Re: I'm with you

Sadly there is no quality data.

Only when you are Insulin dependent do you record "Real time" Hb1Ac readings. And these are held on devices in the patients domain of control.

[Anonymous Coward]

Re: I'm with you

As someone with type 1 diabetes, having had the condition for nearly 50 years and no sign of anything needing chopping off, having lasers fired at it or being pumped full of other drugs to counteract the many possible long term impacts of the condition if poorly managed or very unlucky.

Give that Banting and Best only had dogs to experiment on when they induced diabetes and re-injected insulin to stabilise the condition in the animal, as much as I love little genetically consistent mice, I would rather they're experimented on to find a cure than I and millions of others have their personal data trawled by not only profit-seeking drug companies, but potentially handed over to insurers etc. As has been mentioned elsewhere here, the UK doesn't just restrict data grabs to research companies - everyone gets access, and anonymisation lasts about 5 minutes once all those other publicly available data sets are correlated.

As much as I dislike adhominem attacks (yeah so don't do'em then, you say), the author's medical condition is really secondary to his business interests - i.e. medical trial funding models, so his near scare-tactic submission of "They're going to chop off our legs if we don't hand over the data!!!" would be in the majority of cases be his own fault for not managing his condition adequately...

Get your hands off of my data :-)

[Milo1970]

Re: I'm with you

What are his business interests? It sounds like you are making an assumption here without evidence.

[Anonymous Coward]

Re: I'm with you

If you spend 5 seconds searching his name on a popular ad-driven search engine you'll find the first few results are his twitter account and linkedin profile, where you'll find his professional info and link to a publication in a medical journal about pay-to-play medical trials. I'm not publishing any fuirther personal info here.

[pmb00cs]

I feel for the author of this article. And he makes a sound, if somewhat emotionally charged, point that research done for the public benefit by universities needs access to data. But this debate isn't about just giving data to university departments, and I contend that the solution to this specific use case isn't selling all our medical records down the river to anyone, but to properly fund University research teams. So yes, the author's risk is greater from his condition, than their individual risk from their medical data getting out, but what about my individual risk? What about the individual risk of every single person in the country? What about the risk to society of weakening data protection laws to allow the sort of wholesale access to medical records that is implied by the idea of "implied consent"?

I do not think selling the medical records of everyone who hasn't been given a realistic opportunity to ask what the data will be used for simply because they haven't objected yet is a public good. I do not think "implied consent" is consent. And this is before you get to the problems of trust, that result in people failing to seek required medical attention because they cannot trust what will be done with the data the medics will need to treat them.

I personally am very much against this motion.

[Anonymous Coward]

I'm against being blown up by a car bomb.

Does that mean I have to accept the Special Reconnaissance Regiment killing defence solicitors ?

[Anonymous Coward]

Argument from absurdity. I'm against being blown up by a car bomb, so I support the sharing of information that lets me not get blown up by a car bomb.

As the Op puts it, we already share data. Insurers already have data. They have your date of birth, they probably asked you your weight.. They know where you live ergo they know your likely income. If they really cared they could probably work out what you had for dinner last night by cross referencing your recycling bin weight to a Tesco club card.

[Anonymous Coward]

> I feel for the author of this article.

Me too. But the bigger picture is a free at point of use NHS. If selling patient data goes ahead then there is a much, much higher risk of the NHS being privatised by stealth.

So while he feels that future patients will benefit from data sharing, those future patients who find that they can't afford it may well wish he'd made a different decision.

[big_D]

We love it?

Our data is already bought and sold for profit. And we love it.

Er, that would be a big no! I block 2.5M known tracking domains on my network. I have de-googled my phone as much as is possible and block all tracking on the device that I can, don't give permissions that I don't think are relevant to an app etc.

My wife is non-technical, but is paranoid about being tracked. Without prompting, she came to me one day and ordered me to "de-google" her phone.

There is a growing minority of people on the Internet that treasure their privacy and don't want to be tracked and prodded at every turn.

interact with our “free” social media accounts, when we walk down the street, through a shopping centre or log on in a coffee shop, our data is grabbed. We give it up for free Wi-Fi.

Yeah, uh, no! Not me. Facebook & Co. are blacklisted at Chez big_D. Never use open Wi-Fi. Don't use any loyalty cards or apps etc. when shopping.

[chris street]

Re: We love it?

"I block 2.5M known tracking domains on my network." If that list is available for others to also make use of I'm sure beer tokens could be sent to yourself or a suitable charity as means of appreciation....

[big_D]

Re: We love it?

It is a collection of different lists on GitHub and similar places.

If you look on the PiHole forums, there are often lists of recommended lists.

[eionmac]

Re: We love it? A single list

Could you make a single list for benefit of others. State how to use it for those who do not know how to do it.

Teaching others is better than 'bragging rights'.

[VicMortimer]

Re: We love it? A single list

I happened to have a window open.

https://firebog.net/

To use those lists, documentation is available at https://docs.pi-hole.net/

[Milo1970]

Re: We love it?

Not you. Not your wife. Not many people. But most people don’t do what you do. Hence, the FB subversion of democracy. You and the tech savvy cohort here are not most people, sadly.

[Anonymous Coward]

Sorry, you're betting on the wrong horse

While I have sympathy and wish you well, the assumption sharing data = more research is a fallacious one. So fallacious one could even consider it an all-purpose weasel argument along the lines of "you cold-hearted bastards, would you deny me salvation?".

I'm sorry, but as others already said, sharing your data won't cure you, all it will do is increase your insurance costs and prevent you from getting credit. What would actually help you is research, but that's a wholly different kettle of fish and has nothing to do with selling out peoples' health records. Research doesn't suffer from lack of population data, it suffers from a lack of funds and, for the pharmaceutical industry, the corporate will to tackle the commercially less interesting conditions.

Don't let your concern blind you, you're betting on the wrong horse here. This is unfortunately not the hope you're looking for.

[Milo1970]

Re: Sorry, you're betting on the wrong horse

This is incorrect. You are conflating traditional randomised controlled trials on small populations - n=20 for a typical phase II trial - with mass population studies of, say, the effects of metformin on a mass population in regard to its effects on reducing the prevalence of a range of cancers. The first doesn’t and can’t replace the second. They are very different things.

[elsergiovolador]

Conflict

– have at it – find me a cure.

The problem is that finding a cure is not profitable. Big pharma can make much more money by selling you medication that you have to take every day for the rest of your life rather than one off treatment.

If they somehow get access to health record, you could be sure that they will work on how to get customers dependent on the on-going treatment for as long as possible.

It's also possible that they'll find a cure, patent some intermediate methods and then shelve it so nobody else could use it.

[Milo1970]

Re: Conflict

OP makes this point. Pharma won’t pay for such data research when it comes to repurposing extant drugs with no IP.

[msknight]

How many people really know what it's costing them?

For those who work with I.T. we are aware of the data we generate, the systems we use, how that data is used, the risks and choices.

I would argue that a good portion of the population do not know this.

The population must be educated properly as to what this means, how it works and the impacts and risks before they can make an informed choice. Debates of this nature suffer a large stumbling block at this point before they even get started.

I know... and I've sat down with my Mother and talked with her about it. We both opted out.

[ecofeco]

Re: How many people really know what it's costing them?

No need to argue what is fact. They know nothing of the data world they sleep walk through.

[jmch]

If the incentives are wrong, you need to change them

"big pharma tends to ignore these orphan diseases. Why bother when so few patients – customers – will get the disease? There is no market."

AND

"no big pharma company will invest in researching new uses for these old drugs, because without IP rights there is no profit to be made."

...are simply the symptoms of the disease which is thinking that market forces can solve everything. At some level we all know that some things can't be fixed by a market - that's why public healthcare exists in the first place. But what's needed is more publically funded research into rare diseases and re-use of old drugs for other diseases. Opening up everyone's data will benefit above all those who can source/buy more data and pay for the infrastructure to examine it - ie tilt the playing field further towards big pharma

"Public sector researchers – universities, for example – are also stymied. To carry out research on the effects of a mass-use drug needs data from thousands, if not millions of people. They can’t afford to run such research. - Yet the data is out there. Millions of people already take these drugs and their data is sitting there waiting to be examined."

At least 1 Covid vaccine was pre-approved based on a sample of no more than 20,000 people receiving the test vaccine. I would bet there isn't a single drug on the market today that needed millions of research subjects to get approved. On the contrary, preliminary trials are usually carried out on hundreds rather than thousands of people. It surely would not be that difficult or onerous for researchers to find a few hundred suitable subjects even with a reduced dataset of only those willing to give their data voluntarily, especially taking into account that people such as the author suffering from such diseases might be much more likely to share their data.

And again, if the problem is funding, the government should supply special funding to public sector researchers as an investment in reducing future healthcare costs. Moreover, voluntarily shared patient data coming from public healthcare should only be shared with public sector researchers, or entities who agree significant royalty reductions on discoveries made through that data.

[Milo1970]

Re: If the incentives are wrong, you need to change them

It is very very hard to recruit eligible patients with rare diseases who fall within the inclusion criteria of any specific trial who are sufficiently close to the research centre. But this piece us not about data as a replacement to RCT trials - it is a whole different paradigm.

[yetanotheraoc]

Re: If the incentives are wrong, you need to change them

"At some level we all know that some things can't be fixed by a market"

That's why some Americans think all Europeans are socialist.

[Trigun]

Re: If the incentives are wrong, you need to change them

Hmm maybe, but it's only true if you try and nationalise absolutely everything. There are benefits to privisation for some sectors, but not others. Health systems are one of the sectors I would put in the latter camp. I wouldn't want us going to the U.S. model of health system, mostly because of the lower paid or jobless in society along with the sometimes collosal conflict of interest their medical companies have when it comes selling drugs like they are cars. Example: opioid epidemic.

[Anonymous Coward]

Re: If the incentives are wrong, you need to change them

The opioid issue isn't just something that can be blamed on capitalist medicine. That was only the very beginning of the problem - and while capitalism certainly IS a massive problem in healthcare, it's not really the thing that turned some overprescribing into a complete nightmare.

No, the real problem was created by the crackdown.

See, after several years of doctors finally adequately treating pain and a few people going overboard with what are powerful drugs, a few problems popped up. One of them being that drugs are VERY expensive in the US, and controlled drugs far more so, because for most Americans the required monthly trip to the doctor was even more expensive than the drugs. So someone who needed opiates either for pain control or addiction maintenance is going to be spending a LOT of money, frequently in the hundreds of dollars a month. There's a black market, of course, there always is. But the vast majority of that market is still the same relatively low strength opiates. Yes, some people OD, yes, there are some deaths. But it's the moral panic that followed that really started killing people.

The government sees the few ODs happening, and starts really putting the screws on doctors. Most doctors stop prescribing opiates at all, they hand it off to pain specialists. The DEA starts cracking down on those too. And lots of people stop being able to get pain treated.

they're still in pain, though. And with the medical route to treatment unavailable, well, there's already a black market. Crackdown intensifies.

Then it becomes nearly impossible to get pills on the black market. The supply has dried up, doctors are going to jail for adequately treating patients, manufacturers have cut production, the pills just aren't there or are prohibitively expensive.

But guess what's cheap? Yup, that would be heroin. So now you've got lots of people who should have been treated for pain and lots of people who just need addiction maintenance who become novice heroin users. Problem is now worse. Crackdown intensifies.

So now it's a bit harder to get heroin into the country, it's harder to transport it. And then a solution to the black market's problem appears. Yup, that would be fentanyl. Much more powerful, much easier to conceal, much easier to transport.

And now a problem that started from a bit of overadvertising of fairly powerful drugs has turned into a major crisis because of a puritanical moral crisis induced enforcement crackdown is killing a lot of people with incredibly powerful drugs.

[chris street]

"And the risks of someone stealing my health data (and doing what with it?)"

Refusing insurance based on your supposed health issues - from medical insurance to mortgages, employment, and beyond. Thats just the obvious use of it. It's the none obvious uses that we don't know about that are more worrying.

"I have no truck with anyone telling me, from the position of perfect health, what is in my interests." whcih is fine until you realise that you are telling everyone else without knowing what their interests are, they they should give up all their privacy in order to potentially benefit you....

[steelpillow]

Or selling it to your partner's ex, so they can send you choccies laced with that peanut butter you are allergic to.

Or refusing you employment because you are a diabetic.

Or outing you as failing to admit an unmarried pregnancy and abortion while under age, just when you were ahead in the election polls.

Or...

[Milo1970]

Insurance - this relates to the US and other jurisdictions with no national health service. This article is written within the UK context where health care is primarily paid for by the tax payer and is therefore free at the point of need.

[Alvar]

Free at point of delivery

But for how long?

[VicMortimer]

It's not health insurance that's a threat.

Your car insurance company might decide to raise your rates because the data suggests your medical history might make you more likely to crash.

Your house insurance might decide you might be more likely to accidentally damage something.

Your bank might decide you may not be likely to live long enough to pay off a loan.

All of those would have a serious incentive to grab the data and de-anonymize it to use against you if they thought it would make them more money.

And health insurance doesn't really matter in the US either. They already have your medical records, and they're no longer allowed to deny you or charge you more because of pre-existing conditions, that's been illegal since 2014.

[Anonymous Coward]

here comes the fear argument

If you don't give us your patient data, they will have to cut off your arms and legs.

Sadly, the fear argument still works.

[Milo1970]

Re: here comes the fear argument

The arguments against data sharing appear to be fear-based - explicitly, around the fear that data will be sold and abused.

On the other hand, the argument in this article appear to be based on the clear benefits to everyone who will experience ill-health of sharing data.

You cannot selectively invoke a 'fear-argument trope' if you are using a fear argument yourself.

[Anonymous Coward]

Assumed consent not even mentioned!

The writer makes much ado about sharing and consent, but completely fails to mention 'assumed consent' or even the difference between opt-in and opt-out - which is the whole point of the debate.

Completely useless article that will do nothing for the 20% or so who agree with the debate's argument.

For the avoidance of doubt, I am one of the 80% disagreeing.

[eldakka]

And again with the same false assertion

Sharing our health data, which, unlike our digital data, will be automatically cleaned, will revolutionise our healthcare.

It will not be cleaned. Saying it is 'clean' or 'anonymised' is false. I would say that it is born from ignorance, but the frequency with which it is repeated, such as with the previous author's 'FOR' argument, leads me to start thinking that at best it is willful ignorance.

It will include at least the patients postcode and date of birth. How many people in the one postcode do you think would have the same date of birth? Add in what medical conditions they are suffering from and their gender - the data is useless without knowing that! - you have an easily identified person.

[jmch]

Re: And again with the same false assertion

"It will include at least the patients postcode and date of birth. "

Which is ridiculous, because for research purposes, decade or half-decade of birth should be granular enough. With regards to postcode, a full postcode identifies a handful of houses. First part of the postcode, which identifies whole towns or sections of large cities, is quite enough detail thanks

[Pcoughlin404]

Insurance and the F-ed up healthcare system

I only have one qualm with sharing my health data, insurance. The US heatlthcare system rewards insurance companies that deny coverage and claims. They get greater profits if the find ways not to pay out. If there was a legally level playing field for insurance purposes, I'll post my data myself in hopes that it would save 1 millionth of a life (not even mine}. The value of my private healthcare data is not what it contains, but the economic impact of it's unintended disclosure. Fix the structural issue and share away in my opinion.

[Anonymous Coward]

Re: Insurance and the F-ed up healthcare system

That's not really true any more, hasn't been since 2014.

They're actually incentivized to pay more claims now. The ACA (aka Obamacare) changed the rules. Now health insurance companies have to use at least 80% of premiums to pay for healthcare, they're allowed to keep up to 20% for administrative costs and profits. Deny too many claims and they have to write a bunch of checks to policyholders to cover the difference. (I've gotten a check most years, last year's premium refund was about $300.)

So they actually can make more profit by paying more claims now.

And of course it's illegal to deny coverage for pre-existing conditions now.

[Cederic]

as an aside

This debate is drawing interest and input, but leaving aside the page views for El Reg, I like that it's happening and that arguments are being made both for and against the motion - both in the articles, and in the comments.

It's a nice addition to the tech news.

[jason_derp]

If a cure for our diabetes comes from sharing our data, we went be able to afford it, and we'll never get health coverage. We can enjoy those amputations early by not being able to convince an insurance company to help pay for our insulin, I guess

[Snowy]

Is that for or against

<quote>I'm diabetic. I'd rather risk my shared health data being stolen than a double amputation

You want my medical records? Good, take them – now find me a cure.</quote>

That sounds very much like an argument for Op-in rather than op-out?

[yetanotheraoc]

Re: Is that for or against

That sounds like his own data is already shared, but he will benefit more if everybody else's data is also shared.

[TomPhan]

It all depends on how well the data can be cleaned

If it was possible to change the data so that no one could be identified, and still retain its usefulness, then it should be automatically shared with an opt out option.

But that's so unlikely to happen, there's been enough errors in the past not to trust anyone who says they can do it, and as we understand more about "big data" it seems the ability to do so will become impossible.

[Loyal Commenter]

Re: It all depends on how well the data can be cleaned

Such a thing belongs in the world of uncopiable banknotes, unbreakable safes and incorruptible government officials.

In a perfect vacuum with the spherical cows.

[Cliffwilliams44]

Honestly I don't have an issue with health data shared between providers who need access to it. Prompt access to the right information can save someones life. Relying on the patient to relay health information and medical history if riddled with problems. And as Dr. House said all the time, "everyone lies!" for what ever stupid reasons.

What I have a problem with is the drive to make all this now "hard copy" available electronically. Not the fact that is is being made available electronically but that A LOT of the companies creating the software and systems to do this are totally incompetent! I have read article after article about the health care companies trying to implement these systems and the software they are implementing is just a hot mess! The software is riddled with bugs and the software vendors are slow if not reluctant to fix them. Some of these problem go so far as when you request data on a particular patient you get data from some other patient! Updates are not in real time or don't happen at all. Some hospitals have had to resort to pulling paper copies of files to get the correct data. All this at the cost of millions, to the point that punting these failed software companies out is not an option as the cost would be far to high!

[Omnipresent]

News Flash

They ain't using it to cure your diabetes.... unless they are handing over to a Chinese geneticist to combine with alligator dna (not beyond reason). They are using it to profit off you. Even if the Chinese doctor could make alligator/human hybrids (they are), you will still die. Everyone does.

I am also against putting my personality inside a machine to try to live forever. Computers are not saving humanity, they are destroying what's left of humanity.

[Milo1970]

Re: News Flash

In regard to diabetes, you are conflating ‘cure’ with ‘better management’. Diabetes is (currently) about Mansgement. Data can help with that.

[Loyal Commenter]

Re: News Flash

The only cure is a new pancreas, in the same way that the only cure for a faulty heart valve is a replacement valve. Everything else is treatment.

[Milo1970]

Re: News Flash

Yes. It’s about better management of the condition. However, you are not correct on the only cure being a new pancreas, rather on implanting the specific cells destroyed on the pancreas within a semi-permeable membrane.

[Loyal Commenter]

Re: News Flash

implanting the specific cells destroyed on the pancreas within a semi-permeable membrane

It's probably splitting hairs, but I'd call all medical implants a treatment, rather than a cure. In the same way that a pacemaker might effectively treat a heart arrhythmia, it's not really a cure, as it requires external maintenance, are implanted cells in an artificial membrane a permanent cure?

Arguably, if those cells are your body's own, e.g. cloned from stem cells, and can be implanted to restore the pancreas' function, job done, no check-ups ever required, good as new, etc. then it’s fair to call it a cure. If they're not, and you have to take immune suppressants for the rest of your life to prevent your body rejecting the cells, or those cells need topping up, or need to be monitored to make sure they don't become cancerous due to the way they were grown and implanted, then: treatment.

[Evil Scot]

Re: News Flash

Which we sort of have.

But it only works in a closed loop embedded system.

Once again, data subject must be present.

[Loyal Commenter]

False Dichotomy

Framing the argument for "sharing" personal data as an either/or in this way ("either I lose my data or my limbs") is an obviously contrived false dichotomy.

I don't think anyone has any real issues around sharing of medical data at a suitably summarised level - i.e. where there is no possible means of identifying an individual from that data, but where it generates useful statistics for e.g. epidemiological research / funding allocation.

I also don't trust, for one second, that any of my personal data is safe with any organisation that I am not in full control of, regardless of the level of regulation. I certainly wouldn't trust it with an organisation that is linked to our shoddy government; doubly so, when you see the likes of Typhoid Dido with their greasy snouts in the trough. She has already presided over at least one mass data breach that involved my personal details, and the idea that medical data could be given to private organisations for the purposes of "research" just hides their real ambitions of buying and selling it like some commodity.

The though of trusting sensitive data with the very worst people in society, the "greed is good" ultra-capitalist Rand worshipping private equity vampires makes me shudder.

[yetanotheraoc]

Speak for yourself

"We prostitute ourselves for a quick digital thrill with little real benefit." -- therefore -- "blah, blah, blah"

What was the name for this particular logical fallacy? Too old to remember. I could do some research, but age has also made me lazy and I am sure someone here knows the answer.

Anyway, I *don't* prostitute myself for quick digital thrills, as people who know me well can attest. I'm afraid I stopped being receptive to any arguments made after this one.

[Trigun]

In my book it should be informed, not presumed, consent. The latter can lead to people not being made aware of what is being done. Look at how this whole thing has been handled thus far: Quietly, almost like no one wanted people to know about it and so thus get consent through lack of public awareness. Not saying that was definitely the intent, but could have been the result (and might still be).

[ecofeco]

Presumed consent is theft.

By definition.

[Loyal Commenter]

see also: Henrietta Lack.

[ecofeco]

So, specific group studies are no longer a thing?

Is there something wrong with group studies as they are currently done? Do they not have enough people? Is there something inherently flawed in the way these studies are currently conducted?

Of course not. This is straight up a lazy, all encompassing grab to cut costs along with more than ample opportunities to lose control of you medical records and have them used against all of us while being sold and resold.

This should be obvious on the very website that reports these abuses every single day. FFS.

It is no more complicated than this.

[Milo1970]

Re: So, specific group studies are no longer a thing?

Wrong. There are many many issues with RCT trials and there is a raft of literature out there on this. But data-based research is not a replacement for that. It is a different paradigm.

[jonathan keith]

Sorry, but...

Our data is already bought and sold for profit. And we love it.

... and that's where you lost me, after the first two sentences.

I think it's fair to state that - at least among the *informed* audience making up the Reg's readership - the majority are entirely opposed to their data being traded beyond their control for someone else's profit.

[Anonymous Coward]

I agree completely. I have many ailments causing issues as I age, none of which have cures. If my meagre data bits can help find a cure for hundreds of thousands or millions of people, by all means TAKE it! :)

[TDog]

Institute of Aviation Medicine, Farborough

When I worked there in the early 80's one of the ethical dilemmas I was told about was about 3rd Reich records from experiments on concentration and death camp victims. They were deiliberately exposed to hypothermia, anoxia and or included in rich oxygen atmospheres and then set on fire. These were attempts to improve treatment of victims who were sailors, pilots, etc who had suffered from the above conditions, usually as a result of combat. They did not anaesthetize the test subjects as this might have created "unrealisitic" results.

This data was recovered at the end of the war and was available to use. Using it would have saved lives but it had been gathered and created in manners that were totally unacceptable. Multiple organisations had access to this data and I cannot comment on what actions were taked by others. I was told that the IAM reproduced the results using pigs which were anaesthetised. I never saw the original test results nor the reproductions and will not comment on the exactitude of the above statements.

I was also informed that the IAM used the 3rd Reich results to guide the tests to reduce the number of tests that were required to help protect aircrew in anoxic and rich oxygen atmospheres - that always struck me as hypocrisy; look we will do these so as not to use this evil data but we will reduce our testing based on the same data.

This ramble is meant to help convey my own personal beliefs that health and similar data will be found in the wild, will be used to both make money and benefit individuals and countries (reducing health care costs and having healthier citizens should do that) and that I would personally rather give my data away in the hope and expectation that it may do some good (sleep apnea, type II diabetes, male, mid 60's, very severe psoriasis and psoriatic arthritis) than die feeling warm safe and comfortable that no-one knows who I am.

There are always uncomfortable and unpleasant truths in history, as many in medicine as any other subject. Some may know who Henrietta Lacks was. We still abuse bits of her for convenience, suitability and any other damn reason we find appropriate. As an aside I find it dryly funny that so many complain that insufficient testing is done on minority groups when she herself was of African origin in USA.

The greater good can be used to justify the acts of the 3rd Reich. It can be used to justify using the data of the 3rd Reich. We were all bloody happy to use it post WW2 (operation paperclip etc) but we deplore how it was created. For me - in the UK - make the data freely available. If you use it you may not make profits from it just as Astra Zenica has done. That is not a tight enough process; it has a sunset clause but it could be made better. I pay my government to handle group problems for me. That is their job not mine. Hey, HMG - put the right laws in place on using the data and then, and only then, go to opt out. You've already done it on organ donation after death, now do it on health information prior to death.

[scrubber]

This will lead to worse health outcomes

> "We prostitute ourselves for a quick digital thrill with little real benefit."

We do, but we also lie about things like DoB, email address, where we live etc. If we know that our medical data is likely to be used against us if it is ever de-anonymised (which is fairly trivial when mixed with Google searches etc.) and that once out there the genie can never be put back in the bottle, then we will start lying to our GP, withholding information that may end up as vital or wasting their time trying to poising the data by lying about symptoms. Once this happens people's health outcomes will get worse - not to mention the dystopian nightmare of your personal health records being available to anyone who wants to see them, from credit card providers to the police to your children's school.

[Potemkine!]

Sharing health data is no guarantee cures will be ever found.

Add to this that the risk is far from being not null that health data when shared will be used at some point against the data provider. Anonymisation is a fairy tale, and one can expect data being disseminated. It could well end into the hands of an employer who might think it's risky to hire someone with such a condition, or a car insurer who might think it's justified to raise the fees because the risks are higher.

[Milo1970]

No research guarantees a cure will be found. Stop all research?

[Anonymous Coward]

all insurance is about 'quantifying' risks.

All insurance is about 'quantifying' risks.

Depending on the size of the risk group, risks can be 'shared' all pay the same (like local area tax system to pay emergency services); or assessed, lower risk get lower premiums, higher risk get higher premiums, like car driver insurance.

Different insurers use different methods.

PS all claim forms will require that initial data to insurer was 'correct' and 'full', no undisclosed things .Or insurance fails to pay out, or goes to law where if not disclosed at trial a subsequent perjury trial might result.

PS I was a part of a small [n=5] joint insurance set of companies against a potential risk, where a claim would bankrupt any one company but a shared cost was manageable. Our articles had very heavy corporate and director level penalties against any non disclosure. (Even if carried out by a junior person unknown to corporate director.)

[Anonymous Coward]

Excellent points

Good luck, I hope they keep you healthy.

[teebie]

"Our data is already bought and sold for profit. And we love it."

It's a bold move to start an article with such an obvious untruth.

At most the article argues for people with rare conditions to be allowed to share their data - which nobody is arguing against - so that there will be research into these conditions - but the article doesn't say how the first would lead to the second. Pharmacy companies aren't interested because there is no profit. University research is poorly funded. If there is a drug for common condition A that treats rare condition B then you still need a company to manufacture it.

[Evil Scot]

Hmm... Interesting comparison to Facebook

Considering FB grab all this data about me to sell advertising space, my data never leaves FB.

They are charging you to slip your adverts into My feed. You know nothing about me.

Only when I click on your link do I start a relationship with you.

This is the way Health data should be shared.

[Anonymous Coward]

Assumed consent is not consent. In this case it assumes that if I was asked "Do you want to share your life with all these people, most of whom you have never met, and will never meet?" that I would say "Yes of course, just keep my name out of it".

When we get to assumed consent being legal, where do we stand with rape?

DEFENCE LAWYER: My client was obviously within his rights to assume that consent was given because the complainant was unconscious and therefore did not withhold consent. If she had been aware she could have opted out. My client is a reasonable law abiding man.

JUDGE: That's alright then. Case dismissed!

???

[Conundrum1885]

Time

As it happens it's entirely possible I may not have as much as first thought.

If selling my medical and genetic records to research companies helps even one other person then it would be worth it.

[an.other_tech]

Really empathise with his point of view, having medical issues of a multiple nature, but why would pharma companies find a cure to something that makes them money ?

It could be akin to a sweet firm saying they're inventing an ever lasting gobstopper or chewing gum that doesn't loose it's flavour or texture. (Thanks Roald Dahl)

Look at Michelin's lifetime tyres, you buy 1 set that doesn't wear out, yet where are they now ?

Perhaps, and this is a non-empathic viewpoint, humans only survive if they are able, no medicines or treatments available, so the weak are whittled away, and nature takes its course.

Of course if that were the case, then this comment wouldn't be written....