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Maybe it's the french in my talking, but I really have a hard time trusting anything else than the state to handle health data. Anytime you associate health wi

Maybe it's the french in my talking, but I really have a hard time trusting anything else than the state to handle health data. Anytime you associate health with financial motivation, you end up with something twisted on the long run. Sure, you can say that Apple, right now, is in the proper state to do that (although given they were part of PRISM, it's debatable). But what about in 10 years? What if their executives decide that Apple Pay should lead to the creation of a bank? Then from a bank to an insurance company? Then they have a conflict of interest. Simpler than that, what if they change their stance on user data, and decide to exploit it to understand their customers better? Or sell it? Or just partner it to labs, insurance companies, hospitals? Like with facebook, it will of course all be "made anonymous", until it's not anymore. Money and health data are not meant to be mixed IMO. But even without all that, we are adding yet another tracking system on top of what is already a sensor packed pocket self-spying device. It's hard to not worry that such concentration of power has a high potential for suffering.

nbashaw 6y ago
I think you're right about all of this! And to add another point, I worry the only people who will have access to this are those who can afford a bunch of health gadgets and a premium primary care provider. But, at the same time, it's impossible to imagine our government creating such a thing :(
- barry-cotter 6y ago
  > I worry the only people who will have access to this are those who can afford a bunch of health gadgets and a premium primary care provider. A new iPhone SE costs $399 unlocked.
  - nbashaw 6y ago
    Totally, but in order to benefit from this system you'd probably also need a connected mattress, watch, maybe a continuous glucose monitor, some sort of workout device, etc. It adds up. This is a country where half the population earns $40k or less a year.
    - BiteCode_dev 6y ago
      And it's already a lot compared to most other countries.
  - BiteCode_dev 6y ago
    That's a lot of money to most people in the world. To my mother it would be 2 months of food. Even more if taking in consideration planned obsolescence.
    - paulcarroty 6y ago
      Tons $100+ iphones on ebay. Apple devices are everywhere now, obviously it's not luxury class.
    - VLM 6y ago
      To me with my $1700/month health "care" plan its a drop in the bucket. You have to compare apples to apples. This is the kind of industry where a visit to the ER for a broken arm can and should cost $50K, supposedly.
  - tjmaglio 6y ago
    Which is peanuts in the overall costs of healthcare. At what point are you given one as part of your welcome kit? There are already health plans in the US that offer fitbits or will subsidize their cost. The game becomes encouraging a healthier lifestyle to help people avoid getting sick or hurt which costs alot less than treating someone once they have developed a full blown disease. It's one place where both the patients' and the insurer's and hospitals' interests are all in line with each other.
- amelius 6y ago
  > But, at the same time, it's impossible to imagine our government creating such a thing :( Government institutions created the internet ...
xenonite 6y ago
On the other hand, I also have a hard time trusting the government with the health data. I would actually prefer a federation of foundations under public law.
- BiteCode_dev 6y ago
  As for most things, we probably would be better of with a lot of separated institutions instead of a big centralized governement: one in charge of police, one in charge of health, on in charge of education, one in charge or budget, all of them separated and not governed by one entity at the top. But that's what we got now, so If I have to chose, I chose the gouvernement. At least in my country: they are paying for health already.
  - Yetanfou 6y ago
    > At least in my country: they are paying for health already. Assuming that you pay taxes it will be you paying for health care services, albeit indirectly. If you live on government subsidies it is others who pay for your health services. The government is the intermediator between tax payers and beneficiaries.
    - BiteCode_dev 6y ago
      Of course, I used that phrasing to highlight the fact it causes less conflicts of interests (albeit not none).
- labster 6y ago
  The most terrifying words in the English language are: I'm from the government and I'm here to health.
  - mola 6y ago
    Yeah well, that's maybe an over active imagination. The best healthcare systems in the world (with respect to quality, and quantity of people getting it) are public health systems. So I dunno, I'd rather have the (functioning democratic) government, a body I actually have a stake in be in charge of health as opposed to a body that it's only duty is to it's share holders. As I see it, a governmental body is (should be) something we all have equal share in independent of our financial situation. I'm quite aware to the ways this body could malfunction. But at least we have a moral footing to work against these malfunctions. With a public/private company as long as it makes money, I have no moral grounds to oppose it ruining my and our lives.
saagarjha 6y ago
This is one of the reasons why it’s nice that Apple currently has no access to health data. They might change this is the future, but you can always stop sharing then. (Rather than them saying they’re cool, having your data, and doing something malicious with it later.)
- BiteCode_dev 6y ago
  Because their software is not open source and they are very secretive, you have no way to verify that. No to mention it assumes you would know about their change of heart, which you may not. Apple said they were not part of any spying program, until it was revealed they were part of PRISM. They also said their home button had a hardware problem and you had to buy a new phone, when it's been later demonstrated it could be fixed with software. Everything a company says must be considered marketting until proven otherwise. It's not specific to Apple, and it's not a moral stand. It's a practical approach to have with every companies since their driver is being profitable.
  - DagAgren 6y ago
    > Apple also said they were not part of any spying program, until it was revealed they were part of PRISM. This does not seem like an accurate statement. After the PRISM revelations, which named Apple, Apple said they were unaware of the program and were not giving them access. As far as I know, this is the way things still stand today. The leaks claim access to Apple, Apple says they are not providing access. This may be explained through either party lying, or by the FBI being able to access Apple without their cooperation. > They also said their home button had a hardware problem and you had to buy a new phone, when it's been later demonstrated it could be fixed with software. This also seems inaccurate. Apple has never claimed you need to buy a new phone if the home button breaks. The actual issue is that the home button is part of the security system of the phone, runs its own fingerprint detection and is paired with the mainboard, and thus cannot be replaced without updating this pairing, otherwise there would be a trivial security break for the fingerprint protection. As a result, only Apple have the required access to replace the button, and thus third-party replacements are impossible. As far as I know this is also still the case.
Yetanfou 6y ago
The solution to this conundrum and similar potential problems with other 'smart' devices is to leave them on the (virtual) shelves. If your insurer starts to promote the use of such a device you change insurer. The same goes for car insurance which wants to have access to (live) tracking data on your car, home insurance who demand the installation of and access to 'security systems', the list gets longer and longer. The way things are going this new nosy technology is set to create a new class of Luddites, those who while not averse to technology in itself do not accept their lives to be steered by profit-seeking entities through the use of such. Another interesting question is whether law enforcement will be allowed to access such data and whether it can be used as proof against the wearer. If your data indicates you were in a higher state of alert with a raised pulse, the gyroscope and position sensors indicate you were physically active, the location data puts you in a given area and the microphone picked up suspect sounds they won't need much more to convict you. Who is the legal owner of the data? Some countries give people the right to refuse to testify against themselves so if the data is owned by the wearer I'd expect it to be off-limits to the law. The potential good uses of this type of technology are myriad, it just needs to be made big-brother-proof. That will be a hard task since there are situations where you'd want some of these easily-abused features to be used - e.g. call in emergency services if the device detects a life-threatening condition, etc.
- close04 6y ago
  > leave them on the (virtual) shelves That's easy today because this option is unpopular. But look back and see how many things we (as entire populations, not necessarily individuals) starting accepting that was unfathomable a couple of decades ago. Without strong government intervention we may end up at the point where you can take it or forfeit the insurance.
  - wmeredith 6y ago
    This is what I see coming as the mega corps eat our society alongside software. Look at the regulatory capture the telcos have managed with their negotiated service area monopolies or duopolies. It’s easy to say “buy something else” until there’s nothing else to buy and the product is a requirement for functioning in society (insurance, internet connectivity, healthcare). We need trust busting candidates now.
postingawayonhn 6y ago
> I really have a hard time trusting anything else than the state to handle health data. I would say I'm exactly the opposite. The less data the state has about me the better. In reality it's probably more a concern about anyone having too much data. I don't mind different organisations having little bits but I get concerned when people want to bring it all together.
- SquishyPanda23 6y ago
  > The less data the state has about me the better. This seems to me the wrong mentality. What you ultimately care about is the leverage you have over the entity holding your data. In most cases you have more leverage over the state via voting and lobbying. > it's probably more a concern about anyone having too much data I agree. The issue is what you give up when you let people have that data, and how to mitigate those downsides. > I don't mind different organisations having little bits Sure, but realistically that's not how it will work. The point of gathering all the health data is that it's valuable to provide your health information to other businesses. This is specifically called out in the article, with the example about the gym and your doctor. > but I get concerned when people want to bring it all together. Bringing it all together is the whole idea. Apple may not literally give the raw data to anyone, but they will do what is functionally equivalent. They'll provide an API for third parties to make business decisions about your individual health. There is no way to do this is a privacy-preserving way.
  - darawk 6y ago
    > This seems to me the wrong mentality. What you ultimately care about is the leverage you have over the entity holding your data. In most cases you have more leverage over the state via voting and lobbying. I would argue the exact opposite. I've always found private companies to be far more responsive to my needs than government.
    - arvinsim 6y ago
      Their responsiveness is contingent to how it affects their bottom line.
akudha 6y ago
time trusting anything else than the state to handle health data Why would you trust the state with anything? Didn't the UK govt sell health data to a Google owned company?
- rvz 6y ago
  > Didn't the UK govt sell health data to a Google owned company? The 'Google owned company' was given access to more sensitive health records than they should have with a NHS trust and was found to be illegal. [0] [0] https://www.newscientist.com/article/2139395-google-deepminds-nhs-data-deal-failed-to-comply-with-law/ https://www.newscientist.com/article/2139395-google-deepmind...
- BiteCode_dev 6y ago
  I don't, but I already have to. They run my life, and in France, my health. And they are not for profit. I'm all for putting a better system in place, but meanwhile, I'd rather have my health data being in state own institutions that I feed from time to time with my visits, than having an always on monitor that streams directly my life to a for profit company. But to be honest, I don't want to stream my life to any entity.
rubber_duck 6y ago
And state doesn't care about money ? I've heard several places talking about bumping insurance for stuff the moralising politicians find easy to wilify - from stuff like dietary choices and whatever the diet fad seem to be popular (nutrition being the scam that it is basing mandatory public policy on it is ridiculous), over drinking to smoking, illegal drug use (recreational or performance enhancing) etc. I don't want anyone collecting data on me - I should be in charge of disclosing the information - there is an adage in the PED community - if you mention steroid use to your physician and it gets on your record the next time you brake a bone or catch a cold it's going to be "steroid related". Probably the same shit for rec drugs or regulated nootropics.
- toast0 6y ago
  > if you mention [X] to your physician and it gets on your record the next time you brake a bone or catch a cold it's going to be "[X] related" Yeah, and likely they will treat you differently, and not consider that in outcome analysis. If you badger people about [negative health factor] every time they come in, they're not going to come in early, and you're going to blame the resulting poor outcome on the factor, not the behavior induced by the system. /rant.
lowwave 6y ago
Maybe it's the french in my talking, but I really have a hard time trusting anything else than the state to handle health data. I'm not French, and also feel the same way. It can also due to the fact that is is the center of all the political focus and other stuff. In general US has worse data protection polices than other developed nations (of course still better than country like China).
tinus_hn 6y ago
So do you think the machines in the hospital are running US-os?
- BiteCode_dev 6y ago
  No, and they are very insecure. It's real problem. But they are not meant to be connected to a home base. I don't carry them with me all the time, while they are measuring and streaming metrics about my life.
rakkhi 6y ago
Mentions in the middle Google also doing this a much bigger instl base then just ignores it. Also more specialist devices justs asks for all data that Apple or Google has in the health apps so how is this a moat?
hrktb 6y ago
I’m conflicted as we are having this exact debate with contract tracing: Apple And Google came with a solution and the french gov chose a completely different one. TBH can we trust the current gov. to do the right thing: - In terms of competency: it took how many weeks to come up with an online form to generate a PDF ?. Then their contact tracing app hits all the limitations that motivated Apple and Google to work on an integrated solution, which then again means its effect will be super limited and people just don’t bother installing it. - in terms of legitimacy: a lot of messaging and decisions caused litteraly hundreds of death for stupid or corrupted reasons. Like delaying lockdown because there wasn’t enough contaminated people. I mean, even at this point wearing a mask in public is still officially touted as some “perhaps you do perhaps you don’t” kind of behavior. I really wonder if at this point the gov. is as motivated to keep people alive as some of the global companies.
- 2stop 6y ago
  Neither Apple or Google's solution actually does contact tracing. You still need an army of people and drs working together to contact trace, their solution augments it nicely, but is useless without the people and drs. Apple and Google are (corporate) citizens of our society, I don't see an issue with governments at least asking (if not coercing) them to help in times like these.
nickbauman 6y ago
All valid complaints. However when you look at how doctors deal with data and information tech they seem unable to innovate in that space. No medical establishment has the capability to make something like what Apple is doing. It just doesn't exist in that intellectual DNA. Furthermore, in my experience doctors are terrified of tech. They fear being replaced for some reason. I've seen it over and over. (full disclosure, I've been working the the health sector for a while making new applications using Apple's HealthKit.)
scarface74 6y ago
Maybe it's the french in my talking, but I really have a hard time trusting anything else than the state to handle health data. I wouldn’t trust the American Government with any more power than they have now. It’s not just contempt for the current government, but it wouldn’t matter which party were in power.
- nojito 6y ago
  Health data being in the hands of the private organizations is disastrous. There's no price transparency and there's no recourse for abuse or selective targeting.
  - scarface74 6y ago
    You mean selective targeting like the government just announced with respect to transgender rights and health care? https://www.nytimes.com/2020/06/12/us/politics/trump-transgender-rights.html https://www.nytimes.com/2020/06/12/us/politics/trump-transge...
    - nojito 6y ago
      At least you know that it is happening What's the recourse when that action is hidden away behind some algorithm by a private corporation?
      - scarface74 6y ago
        So knowing is little solace for people that are affected. People who aren’t affected seem to always be the ones saying stuff like this. See for example - “at least we now know that minorities are getting beat by the police now that it is getting filmed” ignoring the fact that it was happening for decades and no one believe it.
  - mrweasel 6y ago
    Not trusting the government doesn’t have to mean trusting companies. I completely agree with you, but I also have my doubts about governments as well. This leaves only the option of my health data being controlled by myself.
mark_l_watson 6y ago
I don't disagree with you in general but I wanted to say why I feel comfortable enough with Apple's approach. I looked at the privacy statements for Apple's health apps and the 3rd party sleeping apps. It is my understanding that all data stays on my watch and iPhone unless it is encrypted. My understanding is that only I have access to this data. I would like to share some data with my doctor and insurance but I want that under my control. EDIT: just wanted to add that I am also in general deathly against IoT devices re: tracking. I read Surielance Capitalism and took the book seriously.
- tempodox 6y ago
  Apple is a for-profit organization that's free to alter their privacy terms any time they want. I don't trust that future modifications of those terms won't make all that data available to anyone who pays. And even if they don't sell the data it will still be a huge attraction for all kinds of black-hats.
  - scarface74 6y ago
    And the government is also free to change the rules depending on the administration in power. I can leave a corporation I don’t like much easier than a government.
    - adamsea 6y ago
      That’s not necessarily true - realistically not using google or Facebook, for the average, non-tech person, is in many ways up there with moving from say, France to Germany (I chose the EU to make a specific point about ease of movement) in terms of difficulty. Also, at least democracies have formal mechanisms for holding governments accountable, even if these mechanisms are often corrupted or flawed. Living in a democracy means you have options beyond “voting with your feet”.
      - scarface74 6y ago
        Even in the best case ignoring the effects of the electoral college, two senators per state regardless of the population and gerrymandering suppressing the will of the people. It’s fine when a democratic government having power is ruled by the majority as long as you are in the majority. Look at the history of how the government treats minorities (racial, religious, non straight, etc)
sukilot 6y ago
> Maybe it's the french in my talking, That's a very April 1940 French perspective
jjtheblunt 6y ago
For people who innately distrust the state's competence, maybe it's more appealing.
hackpert 6y ago
That concern immediately screams for an "in perpetuity" agreement that can perhaps only be amended (like a constitution or other open source licenses; amended for updating technology etc.) within certain pre-established limits that are hard to circumvent, such as a limitation on the use of health data for profit via insurance. As long as the company agrees to stick to such an agreement for every customer forever, I don't see the problem (unless, of course, they are secretly selling data that you never find out about and can thus never sue them for -- I don't know how likely that is).
wtmt 6y ago
> Maybe it's the french in my talking, but I really have a hard time trusting anything else than the state to handle health data. I have a hard time letting the state amass more data from people. > Anytime you associate health with financial motivation, you end up with something twisted on the long run. Well, the state is not some objective, incorruptible entity without any ulterior motives. You end up with something twisted even when you let the state handle health data. The key is for individuals to decide how, where, when and what they want to share and provide enough control and literacy on why this is important. Unfortunately, too many people get lost in who should or shouldn't get some data and miss the point of maintaining one's freedoms.
kgin 6y ago
For many people, most of wanting to keep their data private is to keep it private FROM the state.
- black_puppydog 6y ago
  Can I haz both plz, state and corps? Kthxby
- shadowtree 6y ago
  A for-profit company will sell or hand-over data at the government's request anyway. Apple's stance on encryption of phones is nice, but once health data is on a server, nothing matters. Anything cloud is government property, just like all financial data. Now, if your health data starts in state owned DBs, like say in Germany, there is a fighting chance the data will stay in Germany. Once it is in a global cloud like AWS, GC, Azure? Any major government has access. China bought so much data already, and with recent enforcement of their Cybersecurity laws, all data touching their citizens is fair game. Oracle pulled out of China, other like AWS go the route of joint ventures to continue operating.
  - kgin 6y ago
    Apple Health data is stored on the phone only. It would end up in encrypted iCloud backups of the phone, which would put it in the government requesting all your data with a warrant situation. It’s not an easily accessible thing.
wait_a_minute 6y ago
Why would you trust the state either? States aren't exempt from abuses of power or needing to balance a budget.
mrweasel 6y ago
As a Dane I don’t trust the government with my health data, but I don’t have a choice. Don’t get me wrong, it mostly perfectly safe and well managed, but then a government organisation mail CD-Roms with health data (unencrypted) on 5 million people to the Chinese embassy by mistake. Or the politicians decides that I can have medical help, but I lose all control of any tissue samples taken in the process, they will now be stored forever. I also have to accept that my daughters DNA is now stored by the government, and that’s not comforting in a country where xenophobes have to much power.
m463 6y ago
> you can say that Apple, right now, is in the proper state to do that I wonder why you say that. Is it because apple has been pushing the "privacy is a right" dialog and that somehow makes apple more trustworthy, right now? Because I think apple is, right now, playing both sides of the privacy game. for instance, all the blockers they allow are opt-out rather than opt-in. Actually all their data choices are opt-out. I think they know statistically that nobody would willingly opt-in, so for business advantage (and fear?) that's what they do. IHMO any data collected, whether "anonymized" or not, can be used against people and the human race so it should be opt-in. And opt-in should not be cleverly engineered into a faustian bargain.

nbashaw 6y ago

I think you're right about all of this! And to add another point, I worry the only people who will have access to this are those who can afford a bunch of health gadgets and a premium primary care provider. But, at the same time, it's impossible to imagine our government creating such a thing :(

barry-cotter 6y ago
> I worry the only people who will have access to this are those who can afford a bunch of health gadgets and a premium primary care provider. A new iPhone SE costs $399 unlocked.
- nbashaw 6y ago
  Totally, but in order to benefit from this system you'd probably also need a connected mattress, watch, maybe a continuous glucose monitor, some sort of workout device, etc. It adds up. This is a country where half the population earns $40k or less a year.
  - BiteCode_dev 6y ago
    And it's already a lot compared to most other countries.
- BiteCode_dev 6y ago
  That's a lot of money to most people in the world. To my mother it would be 2 months of food. Even more if taking in consideration planned obsolescence.
  - paulcarroty 6y ago
    Tons $100+ iphones on ebay. Apple devices are everywhere now, obviously it's not luxury class.
  - VLM 6y ago
    To me with my $1700/month health "care" plan its a drop in the bucket. You have to compare apples to apples. This is the kind of industry where a visit to the ER for a broken arm can and should cost $50K, supposedly.
- tjmaglio 6y ago
  Which is peanuts in the overall costs of healthcare. At what point are you given one as part of your welcome kit? There are already health plans in the US that offer fitbits or will subsidize their cost. The game becomes encouraging a healthier lifestyle to help people avoid getting sick or hurt which costs alot less than treating someone once they have developed a full blown disease. It's one place where both the patients' and the insurer's and hospitals' interests are all in line with each other.
amelius 6y ago
> But, at the same time, it's impossible to imagine our government creating such a thing :( Government institutions created the internet ...

xenonite 6y ago

On the other hand, I also have a hard time trusting the government with the health data. I would actually prefer a federation of foundations under public law.

BiteCode_dev 6y ago
As for most things, we probably would be better of with a lot of separated institutions instead of a big centralized governement: one in charge of police, one in charge of health, on in charge of education, one in charge or budget, all of them separated and not governed by one entity at the top. But that's what we got now, so If I have to chose, I chose the gouvernement. At least in my country: they are paying for health already.
- Yetanfou 6y ago
  > At least in my country: they are paying for health already. Assuming that you pay taxes it will be you paying for health care services, albeit indirectly. If you live on government subsidies it is others who pay for your health services. The government is the intermediator between tax payers and beneficiaries.
  - BiteCode_dev 6y ago
    Of course, I used that phrasing to highlight the fact it causes less conflicts of interests (albeit not none).
labster 6y ago
The most terrifying words in the English language are: I'm from the government and I'm here to health.
- mola 6y ago
  Yeah well, that's maybe an over active imagination. The best healthcare systems in the world (with respect to quality, and quantity of people getting it) are public health systems. So I dunno, I'd rather have the (functioning democratic) government, a body I actually have a stake in be in charge of health as opposed to a body that it's only duty is to it's share holders. As I see it, a governmental body is (should be) something we all have equal share in independent of our financial situation. I'm quite aware to the ways this body could malfunction. But at least we have a moral footing to work against these malfunctions. With a public/private company as long as it makes money, I have no moral grounds to oppose it ruining my and our lives.

saagarjha 6y ago

This is one of the reasons why it’s nice that Apple currently has no access to health data. They might change this is the future, but you can always stop sharing then. (Rather than them saying they’re cool, having your data, and doing something malicious with it later.)

BiteCode_dev 6y ago
Because their software is not open source and they are very secretive, you have no way to verify that. No to mention it assumes you would know about their change of heart, which you may not. Apple said they were not part of any spying program, until it was revealed they were part of PRISM. They also said their home button had a hardware problem and you had to buy a new phone, when it's been later demonstrated it could be fixed with software. Everything a company says must be considered marketting until proven otherwise. It's not specific to Apple, and it's not a moral stand. It's a practical approach to have with every companies since their driver is being profitable.
- DagAgren 6y ago
  > Apple also said they were not part of any spying program, until it was revealed they were part of PRISM. This does not seem like an accurate statement. After the PRISM revelations, which named Apple, Apple said they were unaware of the program and were not giving them access. As far as I know, this is the way things still stand today. The leaks claim access to Apple, Apple says they are not providing access. This may be explained through either party lying, or by the FBI being able to access Apple without their cooperation. > They also said their home button had a hardware problem and you had to buy a new phone, when it's been later demonstrated it could be fixed with software. This also seems inaccurate. Apple has never claimed you need to buy a new phone if the home button breaks. The actual issue is that the home button is part of the security system of the phone, runs its own fingerprint detection and is paired with the mainboard, and thus cannot be replaced without updating this pairing, otherwise there would be a trivial security break for the fingerprint protection. As a result, only Apple have the required access to replace the button, and thus third-party replacements are impossible. As far as I know this is also still the case.

Yetanfou 6y ago

The solution to this conundrum and similar potential problems with other 'smart' devices is to leave them on the (virtual) shelves. If your insurer starts to promote the use of such a device you change insurer. The same goes for car insurance which wants to have access to (live) tracking data on your car, home insurance who demand the installation of and access to 'security systems', the list gets longer and longer. The way things are going this new nosy technology is set to create a new class of Luddites, those who while not averse to technology in itself do not accept their lives to be steered by profit-seeking entities through the use of such. Another interesting question is whether law enforcement will be allowed to access such data and whether it can be used as proof against the wearer. If your data indicates you were in a higher state of alert with a raised pulse, the gyroscope and position sensors indicate you were physically active, the location data puts you in a given area and the microphone picked up suspect sounds they won't need much more to convict you. Who is the legal owner of the data? Some countries give people the right to refuse to testify against themselves so if the data is owned by the wearer I'd expect it to be off-limits to the law. The potential good uses of this type of technology are myriad, it just needs to be made big-brother-proof. That will be a hard task since there are situations where you'd want some of these easily-abused features to be used - e.g. call in emergency services if the device detects a life-threatening condition, etc.

close04 6y ago
> leave them on the (virtual) shelves That's easy today because this option is unpopular. But look back and see how many things we (as entire populations, not necessarily individuals) starting accepting that was unfathomable a couple of decades ago. Without strong government intervention we may end up at the point where you can take it or forfeit the insurance.
- wmeredith 6y ago
  This is what I see coming as the mega corps eat our society alongside software. Look at the regulatory capture the telcos have managed with their negotiated service area monopolies or duopolies. It’s easy to say “buy something else” until there’s nothing else to buy and the product is a requirement for functioning in society (insurance, internet connectivity, healthcare). We need trust busting candidates now.

postingawayonhn 6y ago

> I really have a hard time trusting anything else than the state to handle health data. I would say I'm exactly the opposite. The less data the state has about me the better. In reality it's probably more a concern about anyone having too much data. I don't mind different organisations having little bits but I get concerned when people want to bring it all together.

SquishyPanda23 6y ago
> The less data the state has about me the better. This seems to me the wrong mentality. What you ultimately care about is the leverage you have over the entity holding your data. In most cases you have more leverage over the state via voting and lobbying. > it's probably more a concern about anyone having too much data I agree. The issue is what you give up when you let people have that data, and how to mitigate those downsides. > I don't mind different organisations having little bits Sure, but realistically that's not how it will work. The point of gathering all the health data is that it's valuable to provide your health information to other businesses. This is specifically called out in the article, with the example about the gym and your doctor. > but I get concerned when people want to bring it all together. Bringing it all together is the whole idea. Apple may not literally give the raw data to anyone, but they will do what is functionally equivalent. They'll provide an API for third parties to make business decisions about your individual health. There is no way to do this is a privacy-preserving way.
- darawk 6y ago
  > This seems to me the wrong mentality. What you ultimately care about is the leverage you have over the entity holding your data. In most cases you have more leverage over the state via voting and lobbying. I would argue the exact opposite. I've always found private companies to be far more responsive to my needs than government.
  - arvinsim 6y ago
    Their responsiveness is contingent to how it affects their bottom line.

akudha 6y ago

time trusting anything else than the state to handle health data Why would you trust the state with anything? Didn't the UK govt sell health data to a Google owned company?

rvz 6y ago
> Didn't the UK govt sell health data to a Google owned company? The 'Google owned company' was given access to more sensitive health records than they should have with a NHS trust and was found to be illegal. [0] [0] https://www.newscientist.com/article/2139395-google-deepminds-nhs-data-deal-failed-to-comply-with-law/ https://www.newscientist.com/article/2139395-google-deepmind...
BiteCode_dev 6y ago
I don't, but I already have to. They run my life, and in France, my health. And they are not for profit. I'm all for putting a better system in place, but meanwhile, I'd rather have my health data being in state own institutions that I feed from time to time with my visits, than having an always on monitor that streams directly my life to a for profit company. But to be honest, I don't want to stream my life to any entity.

rubber_duck 6y ago

And state doesn't care about money ? I've heard several places talking about bumping insurance for stuff the moralising politicians find easy to wilify - from stuff like dietary choices and whatever the diet fad seem to be popular (nutrition being the scam that it is basing mandatory public policy on it is ridiculous), over drinking to smoking, illegal drug use (recreational or performance enhancing) etc. I don't want anyone collecting data on me - I should be in charge of disclosing the information - there is an adage in the PED community - if you mention steroid use to your physician and it gets on your record the next time you brake a bone or catch a cold it's going to be "steroid related". Probably the same shit for rec drugs or regulated nootropics.

toast0 6y ago
> if you mention [X] to your physician and it gets on your record the next time you brake a bone or catch a cold it's going to be "[X] related" Yeah, and likely they will treat you differently, and not consider that in outcome analysis. If you badger people about [negative health factor] every time they come in, they're not going to come in early, and you're going to blame the resulting poor outcome on the factor, not the behavior induced by the system. /rant.

lowwave 6y ago

Maybe it's the french in my talking, but I really have a hard time trusting anything else than the state to handle health data. I'm not French, and also feel the same way. It can also due to the fact that is is the center of all the political focus and other stuff. In general US has worse data protection polices than other developed nations (of course still better than country like China).

tinus_hn 6y ago

So do you think the machines in the hospital are running US-os?

BiteCode_dev 6y ago
No, and they are very insecure. It's real problem. But they are not meant to be connected to a home base. I don't carry them with me all the time, while they are measuring and streaming metrics about my life.

rakkhi 6y ago

Mentions in the middle Google also doing this a much bigger instl base then just ignores it. Also more specialist devices justs asks for all data that Apple or Google has in the health apps so how is this a moat?

hrktb 6y ago

I’m conflicted as we are having this exact debate with contract tracing: Apple And Google came with a solution and the french gov chose a completely different one. TBH can we trust the current gov. to do the right thing: - In terms of competency: it took how many weeks to come up with an online form to generate a PDF ?. Then their contact tracing app hits all the limitations that motivated Apple and Google to work on an integrated solution, which then again means its effect will be super limited and people just don’t bother installing it. - in terms of legitimacy: a lot of messaging and decisions caused litteraly hundreds of death for stupid or corrupted reasons. Like delaying lockdown because there wasn’t enough contaminated people. I mean, even at this point wearing a mask in public is still officially touted as some “perhaps you do perhaps you don’t” kind of behavior. I really wonder if at this point the gov. is as motivated to keep people alive as some of the global companies.

2stop 6y ago
Neither Apple or Google's solution actually does contact tracing. You still need an army of people and drs working together to contact trace, their solution augments it nicely, but is useless without the people and drs. Apple and Google are (corporate) citizens of our society, I don't see an issue with governments at least asking (if not coercing) them to help in times like these.

nickbauman 6y ago

All valid complaints. However when you look at how doctors deal with data and information tech they seem unable to innovate in that space. No medical establishment has the capability to make something like what Apple is doing. It just doesn't exist in that intellectual DNA. Furthermore, in my experience doctors are terrified of tech. They fear being replaced for some reason. I've seen it over and over. (full disclosure, I've been working the the health sector for a while making new applications using Apple's HealthKit.)

scarface74 6y ago

Maybe it's the french in my talking, but I really have a hard time trusting anything else than the state to handle health data. I wouldn’t trust the American Government with any more power than they have now. It’s not just contempt for the current government, but it wouldn’t matter which party were in power.

nojito 6y ago
Health data being in the hands of the private organizations is disastrous. There's no price transparency and there's no recourse for abuse or selective targeting.
- scarface74 6y ago
  You mean selective targeting like the government just announced with respect to transgender rights and health care? https://www.nytimes.com/2020/06/12/us/politics/trump-transgender-rights.html https://www.nytimes.com/2020/06/12/us/politics/trump-transge...
  - nojito 6y ago
    At least you know that it is happening What's the recourse when that action is hidden away behind some algorithm by a private corporation?
    - scarface74 6y ago
      So knowing is little solace for people that are affected. People who aren’t affected seem to always be the ones saying stuff like this. See for example - “at least we now know that minorities are getting beat by the police now that it is getting filmed” ignoring the fact that it was happening for decades and no one believe it.
- mrweasel 6y ago
  Not trusting the government doesn’t have to mean trusting companies. I completely agree with you, but I also have my doubts about governments as well. This leaves only the option of my health data being controlled by myself.

mark_l_watson 6y ago

I don't disagree with you in general but I wanted to say why I feel comfortable enough with Apple's approach. I looked at the privacy statements for Apple's health apps and the 3rd party sleeping apps. It is my understanding that all data stays on my watch and iPhone unless it is encrypted. My understanding is that only I have access to this data. I would like to share some data with my doctor and insurance but I want that under my control. EDIT: just wanted to add that I am also in general deathly against IoT devices re: tracking. I read Surielance Capitalism and took the book seriously.

tempodox 6y ago
Apple is a for-profit organization that's free to alter their privacy terms any time they want. I don't trust that future modifications of those terms won't make all that data available to anyone who pays. And even if they don't sell the data it will still be a huge attraction for all kinds of black-hats.
- scarface74 6y ago
  And the government is also free to change the rules depending on the administration in power. I can leave a corporation I don’t like much easier than a government.
  - adamsea 6y ago
    That’s not necessarily true - realistically not using google or Facebook, for the average, non-tech person, is in many ways up there with moving from say, France to Germany (I chose the EU to make a specific point about ease of movement) in terms of difficulty. Also, at least democracies have formal mechanisms for holding governments accountable, even if these mechanisms are often corrupted or flawed. Living in a democracy means you have options beyond “voting with your feet”.
    - scarface74 6y ago
      Even in the best case ignoring the effects of the electoral college, two senators per state regardless of the population and gerrymandering suppressing the will of the people. It’s fine when a democratic government having power is ruled by the majority as long as you are in the majority. Look at the history of how the government treats minorities (racial, religious, non straight, etc)

sukilot 6y ago

> Maybe it's the french in my talking, That's a very April 1940 French perspective

jjtheblunt 6y ago

For people who innately distrust the state's competence, maybe it's more appealing.

hackpert 6y ago

That concern immediately screams for an "in perpetuity" agreement that can perhaps only be amended (like a constitution or other open source licenses; amended for updating technology etc.) within certain pre-established limits that are hard to circumvent, such as a limitation on the use of health data for profit via insurance. As long as the company agrees to stick to such an agreement for every customer forever, I don't see the problem (unless, of course, they are secretly selling data that you never find out about and can thus never sue them for -- I don't know how likely that is).

wtmt 6y ago

> Maybe it's the french in my talking, but I really have a hard time trusting anything else than the state to handle health data. I have a hard time letting the state amass more data from people. > Anytime you associate health with financial motivation, you end up with something twisted on the long run. Well, the state is not some objective, incorruptible entity without any ulterior motives. You end up with something twisted even when you let the state handle health data. The key is for individuals to decide how, where, when and what they want to share and provide enough control and literacy on why this is important. Unfortunately, too many people get lost in who should or shouldn't get some data and miss the point of maintaining one's freedoms.

kgin 6y ago

For many people, most of wanting to keep their data private is to keep it private FROM the state.

black_puppydog 6y ago
Can I haz both plz, state and corps? Kthxby
shadowtree 6y ago
A for-profit company will sell or hand-over data at the government's request anyway. Apple's stance on encryption of phones is nice, but once health data is on a server, nothing matters. Anything cloud is government property, just like all financial data. Now, if your health data starts in state owned DBs, like say in Germany, there is a fighting chance the data will stay in Germany. Once it is in a global cloud like AWS, GC, Azure? Any major government has access. China bought so much data already, and with recent enforcement of their Cybersecurity laws, all data touching their citizens is fair game. Oracle pulled out of China, other like AWS go the route of joint ventures to continue operating.
- kgin 6y ago
  Apple Health data is stored on the phone only. It would end up in encrypted iCloud backups of the phone, which would put it in the government requesting all your data with a warrant situation. It’s not an easily accessible thing.

wait_a_minute 6y ago

Why would you trust the state either? States aren't exempt from abuses of power or needing to balance a budget.

mrweasel 6y ago

As a Dane I don’t trust the government with my health data, but I don’t have a choice. Don’t get me wrong, it mostly perfectly safe and well managed, but then a government organisation mail CD-Roms with health data (unencrypted) on 5 million people to the Chinese embassy by mistake. Or the politicians decides that I can have medical help, but I lose all control of any tissue samples taken in the process, they will now be stored forever. I also have to accept that my daughters DNA is now stored by the government, and that’s not comforting in a country where xenophobes have to much power.

m463 6y ago

> you can say that Apple, right now, is in the proper state to do that I wonder why you say that. Is it because apple has been pushing the "privacy is a right" dialog and that somehow makes apple more trustworthy, right now? Because I think apple is, right now, playing both sides of the privacy game. for instance, all the blockers they allow are opt-out rather than opt-in. Actually all their data choices are opt-out. I think they know statistically that nobody would willingly opt-in, so for business advantage (and fear?) that's what they do. IHMO any data collected, whether "anonymized" or not, can be used against people and the human race so it should be opt-in. And opt-in should not be cleverly engineered into a faustian bargain.