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.
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.
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.
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.
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.
And even if they don't sell the data it will still be a huge attraction for all kinds of black-hats.
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.
There's no price transparency and there's no recourse for abuse or selective targeting.
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.
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.
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).
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.
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.
But, at the same time, it's impossible to imagine our government creating such a thing :(
A new iPhone SE costs $399 unlocked.
Government institutions created the internet ...
Why would you trust the state with anything? 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-deepmind...
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.
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.
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.
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.
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.
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.
(full disclosure, I've been working the the health sector for a while making new applications using Apple's HealthKit.)
That's a very April 1940 French perspective
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.
The visualizations are clear and understandable. For example, I’m significantly less active this spring than last spring—average of 2.2 miles walking per day in 2019 vs. about 1 mile in 2020.
That’s mostly due to stay at home orders due to COVID-19 the past 3 months. Once the weather got better and the number of cases subsided, I started taking walks in my neighborhood due to the actionable data I had.
Remember, the Watch and the iPhone can do machine learning on the device.
What’s missing is an easy way to do more advanced health data processing on my Mac if I wanted to.
I’d like my public health department release an app for COVID-19 exposure notification, using the Apple/Google API.
You could also envision broad clinical trials of treatments for COVID-19 using these components.
> Remember, the Watch and the iPhone can do machine learning on the device.
Great, what is the machine learning?
this is one of the many little harms of blanket stay home orders rather than just distancing (with masks only when you can’t), where you get nearly all of the benefits with nearly none of the downsides.
Through Apple Heart Study, Stanford Medicine researchers show wearable technology can help detect atrial fibrillation
https://med.stanford.edu/news/all-news/2019/11/through-apple...
https://www.apple.com/healthcare/docs/site/Apple_Watch_Arrhy...
An OS with a focus on health seems to make a lot of sense.
If Whoop doesn’t, that is surely a choice Whoop made.
It's a company, it doesn't and cannot care about anything other than profit.
It can care about whatever those people choose to care about.
http://longnow.org/seminars/02018/oct/29/toward-practical-te...
Traditionally, these data sets have lived in silos.
But what could happen if it all was aggregated safely
in one place?
The battle's barely been started for self determination and self ownership of our data.
The biggest area of improvement in health care is at the cheaper end. Many people die annually from being unable to afford the $2.50 it costs for malaria treatment, or life saving vaccines.
The side dish problem is vaccines are insanely profitable; every dollar spent in the US on vaccines supposedly saves fifteen bucks of health care expense. I've seen numbers as low as $10 and as high as $15000. The problem is some very populous political and economic regimes worldwide are so unstable that even 1500% rate of return investments, which would seem a no brainer to fund in the west, are impossible without massive external western involvement. In a system that dysfunctional, malaria might not be the biggest problem, nor incredibly expensive and short lived apple iHealth devices. We've tried allowing infinite immigration from failed states into western states; that didn't help either. Just brain drain's the failed states while exploding welfare expenses in the western states.
Moreover, if the existing medical industry is evidence of anything, prices are jacked up in developed countries to foot the bill of R&D, and the same medications are sold elsewhere for next to nothing.
Apple giving away health technology to disadvantaged communities seems like a good next step. Perhaps existing medical companies aren’t as incentivized to do that because they don’t have the shiny brand to advertise.
I’ve also connected sources using HL7, but it’s hard to scale because it’s like everyone creating import/export interfaces to their system.
I think the benefit of Apple health is that it’s a common, trusted intermediary. Me, the patient.
I think it’s easier for me to pull data from multiple sources and show it to my doctor than for all those medical systems to share with each other so my doctor can see data. If I have 5 health services, it requires 5 export to Apple interfaces for me to collect my data, securely store it, and show it to my doc or to any one of those 5 providers.
To have provider interoperability it requires 30 interfaces (maybe my math is off 2^5-2).
There is stuff like Project Blue Button [0] that tries to make a standard interface to export data.
The complaint that it’s easy to export data is only true if you want to pay some consultant to make an interface. In the US, there’s a report on information blocking [1] that called out areas in healthcare with blocking and proposed some changes to lessen it.
[0] https://www.healthit.gov/topic/health-it-initiatives/blue-bu... [1] https://www.healthit.gov/topic/information-blocking
Just heard an interview with author of recent paper about global risk of increased mortality due to climate change. (Radio, no cite, sorry.) Research team has clarified impact of "wet bulb", which is somehow combo of both ambient temperature and humidity, and prevalence of heat related deaths.
Not just the Middle East, but also provided examples from Europe, Toronto, Louisiana.
While wet bulb temp of 35 °C is life threatening, paper shows that with higher humidity even 27 °C can be dangerous for at-risk persons and has led to greater mortality.
While the risk will certainly get worse, people have no intuition for it. Especially for outdoor work and activities.
Any way.
My immediate thought was my watch can alert me to wet bulb risks, a combination of weather and health monitoring.
https://en.wikipedia.org/wiki/Wet-bulb_temperature#Wet-bulb_...
How does that math work, you're asking? Right now you and I can check "non-smokers" on medical documents. And that's true, at least for me, medically speaking.
However after we fuse all sources of data we can punish everyone. I bought two packs of cigars in the 90s when I was a dumb young kid. Medically speaking a quarter century later I'm a non-smoker from a health perspective. However, from a revenue generation perspective...
Big brother is not going to fund this out of the goodness of their heart to be revenue neutral or (gasp) positive for the public. The only purpose for this expensive initiative will be to screw over the general population even more to increase income inequality a little more and make the rich just a little richer.
Most electronic health record systems are really terrible software, and they’re also very profitable pieces of software. Google, Apple, and Microsoft are probably the only companies with enough money and software engineering talent to start from scratch and disrupt that space.
Some interesting further reading: https://medium.com/design-and-tech-co/how-google-ehr-could-f...
You really don’t want to build an EHR if you can avoid it.
Santosh Kumar has been heading a large NSF research center investigating wearable medical sensing and how to turn sensor data into actionable health advice:
Tanzeem Choudhury has been doing some work at the intersection of AI and sensing and health:
Deborah Estrin's Small Data Lab is doing some interesting work too:
In the immediate human sense recall that this was the health app that launched with no way to record your menstrual cycle (a very important aspect of health for about half of humanity, the half that makes new humans I should add.)
In the deeper sense, we might encode "humors" into the design of our system. Our knowledge is incomplete. (E.g. the microbiome, or the "interstitium" which has been called "a new organ" https://www.livescience.com/62128-interstitium-organ.html )
It's important that our data systems handle open-world rather than closed-world data, eh? https://en.wikipedia.org/wiki/Open-world_assumption
(As a practitioner of Reiki I can attest that scientific medicine does not yet capture all relevant variables.)
Last but not least, the crux of the issue turns on what Martin Buber called "I and Thou": https://en.wikipedia.org/wiki/I_and_Thou
> Buber's main proposition is that we may address existence in two ways:
> The attitude of the "I" towards an "It", towards an object that is separate in itself, which we either use or experience.
> The attitude of the "I" towards "Thou", in a relationship in which the other is not separated by discrete bounds.
There is a subtle trap in thinking of the body as "it" (and also a trap in thinking of the body as "thou", and another as "I"). It behooves us to be careful what we automate.
https://www.healthit.gov/hitac/committees/health-it-policy-c...
This is seen as desirable for more than one purpose, including allowing people to move their medical records to a new doctor or hospital easily, and for doing research on what makes for the best care, as well as giving doctors the ability to look at case histories similar to that of a patient they are treating.
Computerization of medicine has been resisted by doctors for a long time, which has meant that all the data and observations and diagnosis made over the years has essentially been lost when it could have been informing doctors decisions and being used in research. There are definitely privacy and abuse problems with putting everyone's health data in a central database run by the government, and it is very difficult to de-identify health data (how many people have your height, weight, age, and diseases?), but without some way to gather all the knowledge and experience and data from the practice of medicine we have been missing important correlations and creating harm due to each doctor making their own decisions instead of having a set of best practices informed by hard data. Whether the police, FBI, NSA, courts, and politicians should have access to this data are difficult questions and hard to implement so they are not subject to abuse. The police already can make some kinds of queries at hospitals for medical data.
The UK has started a large scale Precision Medicine project that is collecting health data on 500,000 people:
https://en.wikipedia.org/wiki/UK_Biobank
There are other ongoing large scale projects collecting health data also:
and I'm sure there are others, in many countries. A lot of this is part of the move towards Precision Medicine, medicine based on data and personalized to an individual, rather than treating all people as being identical and letting each doctor make their own guess on how to treat a patient (I've been in meetings where doctors say that 80% of the time they are guessing, though guesses get better as they see what works and what doesn't for any one patient):
https://en.wikipedia.org/wiki/Precision_medicine
The space Apple is aiming to dominate is currently one small part of all this. One big question is what do doctors do with all this data? It's too much to look at it all. They have no experience with such detailed info also. What is normal for the way your blood pressure changes as you go about your day? Your doctor doesn't know and hence even if she had continuous blood pressure measurements from you 24/7 wouldn't know what to do with it. What is a reasonable blood pressure while having sex? When climbing stairs? The only measurements like this that we've had historically are from astronauts. Machine Learning may help, but what do you do with an opaque message from an algorithm that there is a 75% chance you have some abnormality in some obscure biological parameter? The chance of 25% of those notifications being wrong means you can't use it as the basis of a diagnosis. Maybe it suggests something you can investigate further, but then how much time will you waste following up on those 25% of notifications that are in error? Was the ML trained for your age, weight, and specific set of health conditions or will it fail to detect anything for people outside the scope of the training data, yet be used to evaluate your health (incorrectly) anyway? And using ML also creates yet another path for bad actors to steal and tamper with your data.
There are a lot of complicated questions surrounding medical data.
If that's what they're doing (which I bet it's not), I'd consider it as a good sign that Apple has run out of good ideas.