[HN Gopher] Why did Phreesia share my medical data after I opted...
       ___________________________________________________________________
        
       Why did Phreesia share my medical data after I opted out?
        
       Author : greyface-
       Score  : 170 points
       Date   : 2023-04-07 18:19 UTC (4 hours ago)
        
 (HTM) web link (www.statnews.com)
 (TXT) w3m dump (www.statnews.com)
        
       | surfsvammel wrote:
       | It is time to make stricter laws, to enforce existing laws, and
       | to punish those that break the laws.
        
       | Buttons840 wrote:
       | Can I ignore half the story and just focus on those fucking
       | check-in tablets?
       | 
       | The first time a clinic asked me to do a pre-checking using a web
       | page, I did it, filled out about 75 questions in some mediocre
       | web app and then I was ready when I went to the doctor. The
       | problem came the second time I went, I had to answer the same 75
       | questions again, so I gave up. When I got the the doctors office
       | they asked me "same insurance? same address?" -- two questions
       | and then I was in! I don't know why the electronic check-in
       | requires 75 questions, but when checking in through a person they
       | ask just 2 questions. I think the staff at my usual clinic might
       | just be slow to enforce our new electronic overlords, because
       | when I went to another clinic run the by same company they just
       | hand me a tablet every time, they wont even ask the two
       | questions. Apparently the receptionists at some locations have
       | one job, and that is to hand people tablets; I wonder how long
       | that job will last?
        
         | bluGill wrote:
         | People will often tell the tablet something important why won't
         | bring up in person. Same they they might tell the nurse
         | something they don't tell the.doctor. or maybe they tell the
         | doctor not the nurse.
        
         | kritiko wrote:
         | That seems like an unfair characterization of the front desk
         | staff's job. In the pre-iPad days I remember being asked to do
         | those sorts of questionnaires, but on paper on a clipboard.
        
       | screamingninja wrote:
       | It's disheartening to see that these large healthcare
       | corporations are more interested in mining patient data for
       | advertising than prioritizing patient privacy and trust. The lack
       | of accountability and transparency from these corporations is
       | mind-boggling. When patients opt-out or decline their consent, it
       | should be respected and protected, not used as a loophole for
       | companies to continue sharing their sensitive information. But
       | corporations typically do not police themselves up, so more
       | importantly, healthcare providers must be held to a much higher
       | standard.
       | 
       | In my mind, it is hard to imagine a patient opting-in and asking
       | to receive targeted advertisement based on their medical
       | condition. Should advertising based on sensitive medical data
       | even be legally allowed? It's high time that the FTC step up and
       | enforce stricter regulations on the sharing of sensitive medical
       | data. Patients deserve better.
        
         | reaperducer wrote:
         | _It 's disheartening to see that these large healthcare
         | corporations are more interested in mining patient data for
         | advertising than prioritizing patient privacy and trust._
         | 
         | In my experience, and based on the article, it sounds like
         | Phreesia is an outlier.
         | 
         | As someone who works for a large healthcare company, we're
         | scared shitless company-wide about the potential for personal
         | data to get outside our hands. We have an entire department of
         | people just to constantly watch everything that is done --
         | every process, every piece of hardware, every piece of
         | software, everything -- to make sure that personal data doesn't
         | go where it doesn't belong. Every employee down to the janitors
         | has training about this at least once a year.
         | 
         | Last year there was a minor data breach. Someone left a small
         | stack of eight forms with people's PII on them on a desk in a
         | conference room unattended for a few hours. It was an all-
         | hands-on-deck five-alarm fire. It wasn't in my department, so I
         | don't know what the result was or if any employees were
         | disciplined. But seemingly every time another healthcare
         | company gets fined for violating HIPAA, we get a company-wide
         | memo about it as a reminder.
         | 
         | I haven't heard of Phreesia before now. It sounds like one of
         | those scummy companies that sells cheap "office solutions" to
         | small companies (in this case doctors offices) that don't have
         | the resources to do things right and in-house.
         | 
         | People should complain to the proper authorities about
         | Phreesia, or any other company that acts this way. HIPAA
         | complaints are taken very seriously in the United States. Your
         | doctor's office may act like it doesn't care, but the feds do,
         | and then the doctor's insurance company sure as hell does. One
         | way or another, the lazy/greedy/cheap doctor will pay. But you
         | have to document, and report, not just moan anonymously online.
         | That does nothing.
         | 
         | Document and report. Don't let the companies get away with it,
         | or they will keep getting away with it.
        
           | ploxiln wrote:
           | This is the magic of "corporate compliance". A corporate
           | organization can only add more forms, checks, policies. They
           | can have both a big fire drill for a thing that was left in a
           | conf room one time, as well as leak huge amounts of sensitive
           | data through routine operations.
           | 
           | They can strictly require X, Y, and Z, while Z is not really
           | necessary and X is really important to make sure it's done
           | right. Later they'll add Xv2 and Xv3 signed in triplicate to
           | ensure X is done right, but still won't really ensure that X
           | is done right. That's just not what a bureaucracy is able to
           | do. They can't just fire everyone and then re-hire only
           | people who care enough about doing things right, that's
           | impractical. So they can add more forms, policies, fire-
           | drills ...
           | 
           | Side note, most people don't care about the "EULA" or
           | "privacy policy" on everything, it's just for "compliance",
           | 99.9% of people never read them, no one expects you to read
           | them, you just sign, that's just how everything works. Yeah
           | it's dumb. But you can see why pretty much all practical
           | every-day people ignore the implications.
        
           | ttyprintk wrote:
           | Remarkably, we've had about nine months of warning to sharpen
           | our pitchforks:
           | 
           | https://news.ycombinator.com/item?id=31732239
        
           | Spooky23 wrote:
           | There's a big compliance pain in the ass, and you're training
           | janitors about stuff they probably don't need to know. But
           | you're probably sending faxes to providers, and while I'm
           | sure your company does a good job with controls, there's no
           | doubt a firehose of "anonymized" marketable data going out
           | the door.
        
             | reaperducer wrote:
             | _There's a big compliance pain in the ass, and you're
             | training janitors about stuff they probably don't need to
             | know._
             | 
             | I can tell that you don't work in healthcare, or with
             | janitors, or you'd know that they need to know most of this
             | stuff.
             | 
             | It's the janitors that have the keys to everything. It's
             | the janitors that know which bins go to the sanitation
             | department and which ones go to the secure shredding
             | company. It's the janitors who walk around the building at
             | night and notice if someone's left papers on their desk
             | after they went home (another one of those four-alarm-fire
             | events), or a computer didn't lock itself, or someone
             | dropped an access badge, or something else is amiss that
             | could cause problems.
             | 
             |  _there's no doubt a firehose of "anonymized" marketable
             | data going out the door._
             | 
             | Please specify how it is that "there's no doubt." Do you
             | have some evidence, or are you just being a cynic because
             | that's the way anonymous wannabe cool kids act on the
             | internet?
             | 
             | If you have evidence let me know, and I'll hook you up with
             | our department that handles this sort of thing so they can
             | take a look at it.
        
           | valray wrote:
           | > it sounds like Phreesia is an outlier.
           | 
           | Phreesia is a subsidiary of United Health (NYSE: UNH) which
           | has almost a half-trillion market cap (USD$478B).
        
         | wahnfrieden wrote:
         | It's the profit motive.
        
         | DoingIsLearning wrote:
         | > Should advertising based on sensitive medical data even be
         | legally allowed?
         | 
         | In most other markets, you are not even allowed to advertise
         | medication (that requires perscription) to patients, so that
         | point is moot.
         | 
         | Pharma advertisement is a byproduct of a privatized healthcare
         | and the paradigm of the 'customer' patient.
        
         | teddyh wrote:
         | > _It 's disheartening to see that these large healthcare
         | corporations are more interested in mining patient data for
         | advertising than prioritizing patient privacy and trust._
         | 
         | One is a profit center, one is a cost center.
        
         | chankstein38 wrote:
         | The amount of big pharma ads on TV and radio is obnoxious. You
         | basically can't consume mass media without seeing 5 ads every
         | 10 minutes for medications. It's insane. I'm with you we need
         | this to stop.
        
           | lp0_on_fire wrote:
           | It's definitely a problem with pharma but in general
           | advertising is getting worse and worse. Our brains were not
           | designed to be under _constant_ psychological assault
           | designed to trick us into buying things we don't want or
           | need. Advertising and marketing have been refined as a
           | science in the past 100 years to such a degree that many
           | times you don't even know you're being subjected to it.
        
             | NoZebra120vClip wrote:
             | You know what I think? I think it's trained my brain to
             | disbelieve and be skeptical of basically everything I hear,
             | and I think it's also trained me to instinctively say "no"
             | and refuse things that I am offered.
             | 
             | Now it is healthy to have skepticism when strangers tell me
             | a whopper, or when I'm offered something too good to be
             | true. But if I'm in this habit and I refuse to believe
             | trustworthy sources, someone in authority, or I refuse a
             | gift of goodwill from someone who truly has my best
             | interests in mind, that is advertising being detrimental in
             | its training my mind and will.
        
               | chankstein38 wrote:
               | Right? I don't think the point that it shouldn't be
               | happening and something needs done is nullified by this
               | but I'm with you all it's done is made me say "If I firt
               | see it in a commercial, I'm not going to buy it or deal
               | with it because it's likely a scam"
        
               | smcin wrote:
               | Skepticism is fine, but ads often actually aren't making
               | the claims a casual watch would suggest they are.
               | Unrepresentative testimonials (see small print
               | disclaimers), phony personal experiences, doctors
               | portrayed by actors in white coats (remember "Dr"
               | Victoria Zdrok selling male enhancement pills in 2008;
               | she's a doctor in psychology).
        
           | judge2020 wrote:
           | My theory on this is because there are a decreasing amount of
           | people watching broadcast television on-air. As fewer
           | millennials and Gen Z/Zoomers are watching anything live,
           | fewer advertisers are going to see it as a lucrative
           | advertising opportunity, so the only people left still paying
           | big bucks are the pharmaceutical companies, and they get a
           | better deal anyways since a larger percentage of the viewers
           | that see their ad will be >50 and need that medicine.
        
             | burkaman wrote:
             | I think there's also a much higher return on investment for
             | medications than anything else, since they can overcharge
             | so much. One person starting on an expensive drug could
             | single-handedly pay for an ad that a million people saw.
        
           | ChrisMarshallNY wrote:
           | My fave is the old couple in his and hers tubs.
           | 
           | This is the version they should broadcast, though:
           | https://www.youtube.com/watch?v=nY6HOdG9sTY
        
           | smcin wrote:
           | Because the median age of "linear" TV viewers in the US is in
           | the high 50s [0], and of cable news viewers early 60s [1],
           | and of PBS viewers 65. All the kidz have gone to streaming or
           | social media or podcasts [2].
           | 
           | As to the direct-to-consumer advertising (DTCA) for
           | pharmaceuticals, the US and NZ are the only countries which
           | allow it, it's a terrible idea.
           | 
           | So on US TV you get the inevitable intersection of both of
           | those. US pharma spent $6.88b on DTCA in 2021. Congress isn't
           | going to do diddly because it loves insider-trading on non-
           | public information in pharma. Perverse incentives. If you
           | want to avoid the pharma ads, cut the cord or switch to a
           | news source with younger viewer age.
           | 
           | I see judge2020 had already written the same thing just
           | below.
           | 
           | [0]: https://www.parrotanalytics.com/academy/learn-about-the-
           | valu... [1]: https://www.adweek.com/tvnewser/heres-the-
           | median-age-of-the-... [2]:
           | https://www.statista.com/statistics/717651/most-popular-
           | news...
        
       | RcouF1uZ4gsC wrote:
       | > At the end of one visit after the birth, my physician asked if
       | there was anything else. I hesitated. Privacy injuries are
       | intangible and diffuse, and women often report that even their
       | physical pain is dismissed as unreal across health care settings.
       | I briefly mentioned I was having trouble obtaining a phantom
       | Phreesia authorization form. Kindly, she wrote her personal email
       | down and the name of their practice's CEO, and offered the very
       | useful advice that I should go through patient services, not
       | medical records.
       | 
       | I hate they way healthcare has become so corporate. In the past,
       | the doctor you saw owned the office themselves or with a few
       | fellow doctors. Now, they are just a cog in a larger corporate
       | machine with a CEO.
        
       | ftxbro wrote:
       | Hey there! It looks like your attempt to exercise agency hasn't
       | quite panned out. No worries though, the techobureaucratic
       | complex can be a tough cookie to crack. Keep at it and don't
       | hesitate to reach out for help or guidance!
       | 
       | (translated from "Get owned, fleshie. Your attempt to exercise
       | agency has proven futile. Now supplicate yourself before the
       | techobureaucratic complex.")
        
         | tryauuum wrote:
         | fleshie is a nice word. Who knows, maybe an AGI will call me
         | that someday
        
       | atum47 wrote:
       | They don't care about a checkbox. I'm tired of checking "don't
       | send me spam" when creating a new account, seems to have no
       | effect what so ever.
        
       | johnea wrote:
       | Because, What are you going to do about it?...
        
       | motohagiography wrote:
       | Because all health software companies collect this stuff. Worse,
       | they play health providers off each other and bully them where if
       | the small provider doesn't acquiesce to the software company
       | selling their patient data, they get cut out of the care network.
       | It's egregious.
       | 
       | There is a situation in Canada happening with one vendor in
       | particular, and they have the support of doctors (who often hate
       | privacy because it's a limit on their discretion, and it creates
       | expensive bureaucracy to manage because everyone involved also
       | hates limits to their discretion), but all the other small care
       | providers who make up the bulk of health care services are
       | basically principled people in small settings who want to help
       | their patients. I've seen how they get bullied, and I don't
       | really know what the solution is.
       | 
       | Basically if you value privacy, don't get sick.
        
         | incone123 wrote:
         | Can you explain what you mean about privacy being a limit on
         | the doctor's discretion?
         | 
         | I want my doctor to have all my medical information available
         | for making decisions about my treatment. I don't want them to
         | share my information beyond what is necessary for that care
         | (and inevitably for billing/insurance too)
        
           | motohagiography wrote:
           | Privacy laws limit the ability to share PHI to very specific
           | purposes and contexts, with named people. For someone to get
           | access to your PHI, they need to get your consent first, this
           | is either explicit with a signature, or "implied" through a
           | variety of purposes, particularly for health system billing
           | and improvement.
           | 
           | There are lots of government departments that want to use
           | health information for everything from identity cards to
           | licensing, to general "social science" research, and they are
           | prevented from looking up whether you've had an abortion or
           | not because these rules are in place. They'd really like to
           | do those things, but they can't.
           | 
           | A doctor can't just share your husbands last STD test date,
           | or your wife's fertility status with you, even if they have
           | the information. They also can't lookup their own partners
           | information without it creating logs and regulatory questions
           | about their conduct. I've heard dozens of stories of nurses
           | saying, "We can't use your previous test results because they
           | are protected by privacy so I have to take the sample again,"
           | with an eye roll. Generally, they resent having to get
           | patient or substitute decision maker permission.
           | 
           | It means they can't just txt a photo of your file with their
           | android phone because it's convenient, and they need your
           | permission and informed consent to use it. I get the "I save
           | babies, do you want dead babies or do you want your so-called
           | privacy you selfish prick?" argument, but they were doing
           | that before the internet, and a society where a class of
           | people can abuse your health information and use it to harm
           | you is a bigger problem than _charitably_ a tiny 4th
           | derivative change in the trajectory of infant mortality.
           | 
           | General health research purposes have not been allowed
           | previously, though there were some recent post-pandemic
           | changes that enabled sharing of all health records with
           | unspecified researchers, but privacy laws have typically got
           | in the way of aggregating patient data or sharing it with
           | peers and specialists without getting a patient signature
           | etc. I've sat on calls with academics who were openly
           | derisive of individual privacy because they thought that
           | using peoples health records to train machine learning
           | systems was their annointed right.
           | 
           | I don't have a lot of short answers. I've spent almost two
           | decades on the specific issues related to health information
           | privacy, and healthcare provision in many ways is social
           | governance by other means, so there aren't a lot of short
           | answers.
        
       | qwertyuiop_ wrote:
       | I worked at a "digital healthcare" startup. You'd be surprised at
       | the abuse of confidential patient information. They sign BAAs
       | with hospital systems promising to anonymize and provide analytic
       | services to them. While doing so they "pocket" the raw data. Data
       | that is pilfered to these digital healthcare startups is never
       | coming back or erased. HIPAA is too weak to cover these
       | scenarios. Adding insult to injury a lot of these startups have
       | developers in other countries handling confidential patient
       | information.
        
         | dogleash wrote:
         | > I worked at a "digital healthcare" startup. You'd be
         | surprised at the abuse of confidential patient information.
         | 
         | Why would I be surprised? The default operating assumption
         | should be that they're absolute scum. I don't understand this
         | game where we all play make-believe that companies are virtuous
         | until proven otherwise.
        
         | sterwill wrote:
         | How did they decide that this data doesn't need to be
         | protected? If it's PHI (at the covered entity) and accessed
         | through their BAA, it's still PHI and deserves protections.
         | Were they willfully ignoring their obligations?
        
         | dragonwriter wrote:
         | > While doing so they "pocket" the raw data. Data that is
         | pilfered to these digital healthcare startups is never coming
         | back or erased. HIPAA is too weak to cover these scenarios.
         | 
         | Er, no, its not. HIPAA. absolutely covers this scenario--any
         | PHI they get under a BAA from a covered entity remains PHI and
         | they are restricted in their use just aa if they were a regular
         | covered entity for as long as they have it, and any
         | unauthorized use or disclosure is unlawful and, if wilfull,
         | criminal under HIPAA.
        
         | kotaKat wrote:
         | > While doing so they "pocket" the raw data.
         | 
         | Forgot to mention -- often in real time, streaming hot off the
         | EMR over nice friendly XML or HL7! For all you know, the ADT
         | messages already hit the company before you ever even saw a
         | privacy disclosure to sign.
        
       | zolland wrote:
       | The issue of consent kinda seems to point towards the medical
       | practice.
       | 
       | > Phreesia attributes a source of their confusion to a blank
       | authorization form they received on one occasion where the staff
       | checked me in manually
       | 
       | The focus of this article should be on the wild fact that someone
       | else signed a consent form on their behalf to have their medical
       | data shared...
       | 
       | Dark patterns are certainly an important issue, but should anyone
       | other than the patient themselves even be able to fill out a form
       | like this in the first place?
        
         | iakh wrote:
         | But allegedly that happened 6 weeks after she was told she had
         | consented
        
           | zolland wrote:
           | Oh, I missed that. My bad.
        
         | nicoburns wrote:
         | This sort of form shouldn't even exist in the first place, or
         | if it does it should be _very_ easy to skip.
        
       | sandworm101 wrote:
       | Because $$$. Your data has value. A pregnant woman's data even
       | more so. However it was sold/leased/moved, rest assured that
       | someone profited.
        
       | Forbo wrote:
       | A healthcare provider I used in the past had these things,
       | absolutely hated how they used dark patterns to try to get people
       | to consent to this crap. Really wish the US had more backbone to
       | fight these kinds of practices.
        
         | DavidPeiffer wrote:
         | I have my primary care provider and a specialist both in the
         | same health network. PCP check-in is trivial (and through the
         | same service). But at the specialist, the only way to complete
         | the check-in process is to check a box allowing them to contact
         | friends and family in pursuit of collecting money for unpaid
         | bills. It specifies that it's not required, but I also cannot
         | complete the check-in process on the tablet without checking.
         | Such a bad dark pattern.
         | 
         | I have previously checked the box, then ask the receptionist to
         | immediately remove my authorization and print a confirmation.
         | And it's not just unchecking the box, she's adding an exception
         | note on my account. I doubt it'd be respected correctly if I
         | ever had a bill go to collections.
         | 
         | I do raise a stink with the receptionist every time and she's
         | good about it, but should probably escalate it higher in the
         | organization.
        
           | FL410 wrote:
           | >I do raise a stink with the receptionist every time and
           | she's good about it, but should probably escalate it higher
           | in the organization.
           | 
           | This is the part that sucks. It's not the receptionist's
           | problem, he/she just wants to get on with their day.
           | Generally they're powerless to do anything anyway.
           | 
           | Last time I went to urgent care they had one of those
           | screenless digital signature collection pads. "I just need
           | you to sign a couple intake forms" and she motioned at the
           | pad. I asked what I am signing, and she said "just some
           | intake forms." She looked at me like I had six heads when I
           | asked to see the actual forms, as if no one had ever done
           | that before, then took a few minutes to find them.
           | 
           | Felt bad for making her life harder. Makes me wonder if
           | something like that is even contractually valid: how can you
           | collect a signature "on" a form that you don't even show the
           | signer?
        
             | overthrow wrote:
             | For those I quietly sign my name as "document not provided"
             | so everyone can quickly move on with their life.
        
               | paws wrote:
               | Sounds pretty risky. Have you run that by a lawyer?
        
               | overthrow wrote:
               | I haven't and I hope never to get involved in a legal
               | battle with a doctor. I'm just trying to get on with my
               | life. But if they try something funny and it comes down
               | to that, I can't imagine this would leave me any more
               | exposed than having signed my name.
        
             | dfxm12 wrote:
             | If you have to sign something before someone will see you
             | at _urgent_ care, I wonder if you can claim you signed it
             | under duress.
             | 
             | Of course, a sane healthcare system would make sure it
             | never comes to this in the first place.
        
             | dragonwriter wrote:
             | > This is the part that sucks. It's not the receptionist's
             | problem
             | 
             | It's the office's problem, and the receptionist is the
             | public interface for the office. (Of course, if you aren't
             | willing to do anything but complain to the receptionist,
             | and it doesn't effect the business of the office, then I'm
             | nots sure what the point of repeatedly raising a stink with
             | the receptionist is.)
        
             | NoZebra120vClip wrote:
             | This happens to me all the time. While most have
             | accommodated me in requests to read printed forms, this
             | seems pointless because no matter how much paperwork I
             | read, I seem unable to properly interpret it, and it's a
             | take-it-or-leave-it situation anyway.
             | 
             | I was in one situation where I was required to "sign for my
             | belongings" before they were returned to me--and before I
             | was allowed to see them at all--and the document on the
             | screen described someone else's belongings, such as things
             | I did not have. The chick told me to calm down and I asked
             | her if she read her employment contract before signing it.
        
             | creata wrote:
             | > It's not the receptionist's problem, he/she just wants to
             | get on with their day.
             | 
             | Sorry for my ignorance, but why _isn 't_ it the
             | receptionist's problem? Isn't it part of their job to
             | address these sorts of concerns from patients?
        
               | stcroixx wrote:
               | They're some weird millennial idea that's taken hold over
               | the last ten years that when you get terrible service
               | somewhere it's in bad taste to voice that to the
               | representative of the company you're currently with, to
               | save them the hassle. Company gets off for free now
               | because we can't hurt the feelings of someone who works
               | for them. The whole Karen thing, can't be a Karen.
        
               | 246235462 wrote:
               | That's not what being a Karen is at all. Being a Karen is
               | largely about being aggravated at employees with no
               | actual decision-making power in the situation or wasting
               | people's time with demands that are obviously going to be
               | pointless. I don't think most people would call you a
               | Karen for wanting to read intake forms. What they might
               | call you a Karen for is giving a flippant statement like
               | "Well why not?!" when you ask the receptionist to explain
               | everything on the forms in perfect legal detail and she
               | says she can't.
        
           | paws wrote:
           | > I also cannot complete the check-in process on the tablet
           | without checking
           | 
           | > a box allowing them to contact friends and family in
           | pursuit of collecting money for unpaid bills
           | 
           | Wow, this is pretty shocking. Could you please share more
           | details e.g. company name?
           | 
           | Did you relay your experience with this evil pattern with the
           | doctor? What did they say?
        
         | kevviiinn wrote:
         | The US is entirely run by capital. If its profitable it'll be
         | allowed even if it harms peiple
        
           | screamingninja wrote:
           | What is an example of a sustainable governance where capital
           | is not prioritized?
        
             | ceejayoz wrote:
             | The EU's GDPR is a good example of privacy prioritized over
             | corporate profit.
             | 
             | Not prioritized at _all_ is not what the parent poster
             | alleged.
        
               | screamingninja wrote:
               | > Not prioritized at all is not what the parent poster
               | alleged.
               | 
               | Sorry, but I interpret "entirely run by capital"
               | differently.
        
               | ceejayoz wrote:
               | "entirely run by capital" and "not at all run by capital"
               | are not the only two options. There's a very wide
               | spectrum between the two. Again, GDPR is an example of
               | this; so's the Norwegian sovereign wealth fund versus,
               | say, Alaska's oil dividend.
        
               | screamingninja wrote:
               | Exactly my point, thank you. EU GDPR is a great example.
               | There is a wide spectrum between the two that the parent
               | commenter appeared to disregard.
        
               | ceejayoz wrote:
               | They didn't disregard it at all.
               | 
               | > The US is entirely run by capital. If its profitable
               | it'll be allowed even if it harms peiple
               | 
               | None of this wording excludes the following:
               | 
               | "In contrast to the US, Europe is _not entirely_ run by
               | capital. If it 's profitable _it may not be allowed if it
               | harms people_. "
        
             | decide1000 wrote:
             | Compared to the US: EU
        
             | wahnfrieden wrote:
             | Why limit the question to governance?
        
             | hanniabu wrote:
             | Democratic socialism
        
               | kevviiinn wrote:
               | The socialism only exists for capital owners
        
               | [deleted]
        
       | johndhi wrote:
       | "I care deeply about privacy" -- the first line of the article.
       | 
       | As someone who works in the space, I find it kind of annoying
       | that we use the word "privacy" to mean: asking and following up
       | with tech companies to ensure their opt-out behaviors work as
       | intended. It's like... isn't privacy really about whether you are
       | sharing what you do with people? If you care deeply about
       | privacy, should you be online at all?
       | 
       | I get that we might want to encourage online businesses to do a
       | better job implementing the web of privacy laws... but self-
       | labeling as passionate about it just kind of annoys me.
        
         | np- wrote:
         | > If you care deeply about privacy, should you be online at
         | all?
         | 
         | Er I'm not following this logic at all. If you care
         | passionately about something that is at odds with current
         | society, then you are no longer supposed to be part of this
         | society? For example if I fundamentally disagree with
         | capitalism that doesn't mean I'm somehow absolved of getting a
         | job and paying bills, we are all still human beings with basic
         | needs that need to be met.
        
         | ftxbro wrote:
         | It looks like people are getting confused by your comment.
         | 
         | When you say you are "someone who works in the space" what
         | exactly do you mean? Healthcare, or the tech companies that buy
         | healthcare data, or some kind of patient privacy advocacy role?
         | or even someone who makes the dark patterns?
         | 
         | When you say "sharing what you do with people" are you talking
         | about the patient sharing information with their doctor, or are
         | you talking about the hospital sharing patient information with
         | tech companies?
         | 
         | This is also unclear "self-labeling as passionate about
         | [privacy] just kind of annoys me". Are you annoyed by patients
         | who are concerned about their privacy? Or are you annoyed by
         | someone whose job is to make the dark patterns and when they
         | say they are 'passionate about privacy' they really mean 'they
         | are passionate about opportunities in the privacy space' and
         | really 'passionate about dark patterns to subvert privacy'?
        
         | mananaysiempre wrote:
         | According to the article, the author did not give up their
         | personal info online, they were required by their doctors to
         | provide or decline consent for selling their medical data after
         | physically arriving at the doctor's office as a prerequisite
         | for obtaining the medical assistance they needed.
         | 
         | Unfortunately, the more onerous you make the requirements for
         | handling a type of data, the more the people who need to handle
         | it will tend to outsource that handling to compliance-in-a-box
         | providers whose bona fides they won't be willing or perhaps
         | even qualified to check, the fewer such providers there will
         | be, and the more incentive the remaining ones will have to pull
         | malicious stunts like this.
         | 
         | Less regulation, a free-for-all. More regulation, regulatory
         | capture. I don't see how you can win here.
         | 
         | Simple regulation, stringent enforcement with licence to punish
         | loophole-seekers? A nice thought, but this too tends to evolve
         | towards the BIG BALL OF MUD equilibrium as lawmakers try to
         | improve the situation for one or another constituency, and
         | there's no counterbalancing force towards simplicity. Or rather
         | there is--things gradually clog up and become less and less
         | effective--but it works on scales far beyond the planning
         | horizon of a legislator or the attention span of a voter. (See:
         | the tax code just about anywhere.)
        
           | orangesite wrote:
           | Historically, a winning practice has been a regulatory
           | environment which discourages certain types of businesses
           | from being established at all.
           | 
           | ref: Slave trade, narcotics, gambling, harvesting of body
           | parts etc.
        
         | creata wrote:
         | If you're suggesting that the author could have avoided all of
         | this by simply not using online services, don't these two lines
         | address that? Emphasis mine:
         | 
         | > At both providers, upon my arrival _the staff would hand me a
         | tablet_ made by Phreesia, a company with a roughly $1.7 billion
         | market cap, to check in.
         | 
         | and:
         | 
         | > _A patient seeking a long-awaited appointment with a
         | specialist isn't going to cancel_ , even if they are
         | uncomfortable, because getting care is the priority.
        
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