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Dramatic growth in mental-health apps has created a risky industry

191 points by axiomdata316 5y ago

jyriand 5y ago
I might be wrong but in EU any app that is going to give you advice about health improvement etc is considered a medical device and regulated accordingly. As long it just tracks and shows you data, it's not a medical device.
rchaud 5y ago
I worked for a mental health software startup until 2017, and even then it was worrying how many market entrants didn't seem to bother with clinical guidelines to mental health. The modern crop of tools are jamming together elements of Uber/Doordash and online dating apps....wellness on demand! Swipe right on your preferred therapist! Most users that haven't gone to therapy or read how CBT works won't know that much of actual therapy is boring homework. You're not paying to vent to a sympathetic ear. You are discussing your issues and then doing homework where you identify negative thinking patterns, and the daily triggers that launch those thoughts. That is not something that should be done through the equivalent of a Drift chatbot, but rather through scheduled, regular conversations. The CEO of my former company was a practicing psychiatrist who resisted the "gamified" nature of modern wellness apps, and set up the software to use DSM-5 criteria for assessing issues. Based on the info provided, it generated a PDF with symptoms related to recognized disorderds, which were to be discussed with a general practitioner at their next appointment. It wasn't supposed to replace the role of actual therapy, but rather to provide decision support to both patients and care providers.
Borrible 5y ago
Having worked in health care for service provider like hospitals, medical offices and health care IT/Data Management/Analysis for health insurance funds, I would consider myself crazy to touch those apps with a ten foot pole, even if in dire need. But then again, I'm one of those mentally healthy bastards having worked for them and stayed sane. Paranoid that is. It probably would be a start to encrypt the data down to field level. Not everybody in IT and data mangling needs to know them. But then again, who cares? Or rather more important, who pays? But there is a buck to be made for sure.
rbartelme 5y ago
https://archive.md/pog41 https://archive.md/pog41
eganist 5y ago
disclosure: I hold an equity position in an end to end encrypted, trust on first use communications app, not really relevant to this conversation so no value in naming them. I'm not terribly surprised at the number of services that have popped up in the last few years, but considering the sensitivity of the data (in many cases, info that most would consider to be some of our deepest feelings on a topic that we wouldn't want just anyone to hear about), I'm surprised at the lack of ventures working to distance themselves from the content of the conversations. It just feels like in this specific niche, protection of data would be a much bigger selling point than most others. I'd imagine any suitably well-funded chat service with end to end encryption could fund a subsidiary venture to build out a therapy-focused implementation of such, and especially in the world of therapy, hand-written notes would probably be preferred anyway, so there shouldn't be much in the way of storage of data aside from directory data for individual users of the service and probably card transaction pointers to a third party processor, plus a handful of other bits that still shouldn't be anywhere near as compromising as actual contents of conversation. Open to discussion on the topic. There's probably an angle I'm not seeing.
- rbartelme 5y ago
  I think it might depend on whether or not U.S. insurance companies are involved. If so HIPAA is a real liability as a company. For example, a former colleague worked at a high profile private research facility that had their HIPAA firewall breached and their entire department was fired. Assuming that chat logs on these apps could fall into that same class of data in the U.S., that's a huge amount of risk/liability as a company.
- ChrisMarshallNY 5y ago
  Folks may remember this little nightmare: https://www.politico.eu/article/cybercriminal-extorts-finnish-therapy-patients-in-shocking-attack-ransomware-blackmail-vastaamo/ https://www.politico.eu/article/cybercriminal-extorts-finnis... Sometimes, it's a good idea to keep things off computers, unless you can be sure of the quality and security (which is a challenge. Everyone says they are "secure," but we keep having clusterf**ks like this).
- DarylZero 5y ago
tjpnz 5y ago
Honestly, one of the best things you can do for your mental health is to spend less time in front of a screen.
Pigalowda 5y ago
From the article: “No universal standards for storing “emotional data” exist. John Torous of Harvard Medical School, who has reviewed 650 mental-health apps, describes their privacy policies as abysmal. Some share information with advertisers. “When I first joined BetterHelp, I started to see targeted ads with words that I had used on the app to describe my personal experiences,” reports one user” >I could drum up a dark fantastical setting of HR departments buying this data and screening candidates with it. Hopefully this patient data gets HIPAA treatment and is more protected.
- SkyPuncher 5y ago
  Most of these apps aren't protected by HIPAA.
  - nopenopenopeno 5y ago
    Why is that?
    - ozzyman700 5y ago
      You can see here [2] what entities HIPPA applies to. A app would probably fall under the rightmost "clearinghouse" column. But, that is only if the app receives data from another cover entity. If the app uses data provided voluntarily from and by the user to the app, the app is not a covered entity. [1] [1] https://blog.focal-point.com/when-does-hipaa-apply-to-health-apps https://blog.focal-point.com/when-does-hipaa-apply-to-health... [2] https://www.hhs.gov/hipaa/for-professionals/covered-entities/index.html https://www.hhs.gov/hipaa/for-professionals/covered-entities...
      - nopenopenopeno 5y ago
        This is a big help! Thanks. Aren’t the apps just matching providers and hosting communication? In which case the providers fall under the first column? At some point, there must be a provider, right?
  - 5y ago
ImaCake 5y ago
The problem is that there is no requirement for these apps to actually work. They might work, or might not. But that doesn’t really impact whether scientists get grants. They make the funders/government look like they care about mental health and these apps are cheap compared to more traditional mental health and psychiatric therapies. The scientists are desperate for the next round of grants funding and are happy to produce something that makes the government funding them look good. This kind of thing is pretty common in science. It can be hard to see from the outside, but it is so obvious once you have been involved in grant writing.
- rdtwo 5y ago
  Well to be honest there is no requirement for mental health treatment to be evidence based so there are a ton on providers that are basically witch doctors. You need to screen hard because state licensing only protects you from harm does not ensure providers actually offer services that work.
- walleeee 5y ago
  used to work in a lab focused on this sort of thing and the money did indeed flow for personalized e-health and digital interventions mediated by smartphone or browser interface maybe things have changed since but I didn't see much incentive for the researchers involved to compare the long term effects of this form of treatment to other options or stop and wonder about the implications, although I'm certain some would like to given a different funding landscape
deleted 5y ago
[deleted]
uptownfunk 5y ago
You know what's probably harmed my mental health the most during this pandemic? Slack.
_jal 5y ago
My company started offering one of these, and wanted permission to disclose... something (never figured out if it was just name/email, or more) to them to onboard me. I asked about data use, including disclosure back to my employer, and never got more than a pointer to their (predictably useless) privacy policy. They (the vendor) deliberately avoided answering anything related to disclosure. How many different angles have we seen on, "...and if we hoover up enough data, profit!" So, thanks, but no thanks.
- heavyset_go 5y ago
  > How many different angles have we seen on, "...and if we hoover up enough data, profit!" Even doctor's offices do this now. I've been to a few that ask you to sign away your rights to privacy so that they can sell your medical information to their partners. It's gross.
- aahortwwy 5y ago
  > How many different angles have we seen on, "...and if we hoover up enough data, profit!" Something I see happen all the time: 1. Organization hoovers up data incidentally as they build a product. 2. Privacy concerns are raised internally, but the organization genuinely has no intention of misusing the data so concerns aren't taken seriously and they're not addressed. 3. Some years pass (sometimes only one or two). 4. Newcomers to the organization now start misusing the data because, hey, it's there. If you have it, why not use it?
  - neon_electro 5y ago
    I witnessed 1, 2, and 3 at my previous job (not mental health data but the data I was concerned about was just as personal and vulnerable to abuse), praying 4 never happens but given the company’s been acquired, I’m not optimistic things will get better. Glad to have moved on from that company.
  - _jal 5y ago
    Yep. When I point this pattern out in other contexts (like talking about how instrumentation can become surveillance after collection), people get upset with me.
ok_dad 5y ago
I'm surprised that this doesn't fall close to the FDA's approval process for medical devices. When I worked at a medical device company and had external training on the requirements, they specified that even a toothbrush could be considered a class 1 medical device[0][1], worthy of a 510k filing. Maybe the apps in question are simply "communications programs" for communications between doctors/therapists and patients, but in that case it seems like HIPAA would apply to these. If they have any algorithms whatsoever, they are definitely medical devices, IMO, though I couldn't find a classification for anything like a "mental health algorithm software" type device. It could be that mental health apps are a gap that the FDA hasn't closed yet? Overall, it seems to be just another case of "move fast and break things" where the "things" are laws. I am not impressed by the corporate greed that seems to be driven by the insane amounts of venture capitalism we have today. To me, it seems like commercial activity in every industry has been hit with an "unethical stick" and all anyone cares about is $$$$$$$$$$$$$$$$$$$$$$$$$. [0] https://www.fda.gov/medical-devices/overview-device-regulation/classify-your-medical-device https://www.fda.gov/medical-devices/overview-device-regulati... [1] search "toothbrush" here: https://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfpcd/classification.cfm https://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfpcd/cla... [none] see "floss" for dental floss, another class 1 medical device: https://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfpcd/classification.cfm?id=1311 https://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfpcd/cla...
- SkyPuncher 5y ago
  > in that case it seems like HIPAA would apply to these. HIPAA is significantly more limited than most people think. Basically, if insurance isn't involved than HIPAA isn't legally required.
  - Red_Leaves_Flyy 5y ago
    Not asking for legal advice, but generally speaking, if insurance pays for app based therapy then it must be HIPPA compliant?
    - SkyPuncher 5y ago
lbrito 5y ago
I always thought of these apps as a sketchy byproduct of US's weird/malfunctioning health system -- kind of like how people use painkillers to forget about their toothache instead of going to a dentist. Can't pay for a medical doctor to treat your mental health condition? Here's an app!
- ch4s3 5y ago
  People are not on any meaningful scale in the US using pain killers to avoid dental care, unless you mean something like aspirin. Or rather, as someone who worked in public health related tech for many years, I've never see any data or heard anyone mention anything like that.
  - markdown 5y ago
    > People are not on any meaningful scale in the US using pain killers to avoid dental care, unless you mean something like aspirin. You've contradicted yourself there. "They aren't, but they are with this one painkiller."
    - blululu 5y ago
      Not really a big contradiction unless you want to be really pedantic. Over the counter painkillers and prescription painkillers are very different beasts. Painkillers as a social ill pretty much exclusively refers to the latter. Nobody would say “I’m on painkillers” while taking aspirin.
      - markdown 5y ago
        > Nobody would say “I’m on painkillers” while taking aspirin. Really? That's exactly what one would say in my country... though they'd more likely to be talking about paracetamol. The strongest one that most people know about is Panadeine Forte (paracetamol + codeine).
    - ch4s3 5y ago
      People usually mean something else by "painkillers", and I wnet on to explain that there doesn't seem to be any evidence behind the claim.
viburnum 5y ago
Same goes for conventional therapy. "Failure to Measure" is #1 on the list: https://feelinggood.com/2018/12/24/120-ten-worst-errors-therapists-make/ https://feelinggood.com/2018/12/24/120-ten-worst-errors-ther...
- jodrellblank 5y ago
  I love Dr Burns' work. I sometimes wonder if a company which wanted to provide good customer service would do Testing at the start and end of every support case. (And not "how did we do?" email surveys which mean "punish the call handler for anything less than 5 stars")
- jasonhansel 5y ago
  Speaking of cybersecurity and shady marketing tactics: that website offers a "free depression test," but when you fill out the survey, they tell you that you have to give them your email address to see the results. Meaning that the test results are sent over unencrypted email.
  - jimkleiber 5y ago
    I think at some level, if strong security / end-to-end encryption is not seamlessly baked into the products we already use, things like this may keep happening. I don't know too many emotional health professionals who are also very knowledgeable in cybersecurity, so people may just use the defaults. Which is why I like Signal and WhatsApp (to some extent) for doing it behind the scenes. I'm willing to bet most people have no idea how public email tends to be.
- cobertos 5y ago
  My therapist hasn't done this, but I do find the decompression of therapy to usually reflect how valuable it was to me anyway. Tracking my anxiety with Daylio has really helped as well. Gives me much better metrics for how my anxiety changes over time and with different medications. Hardest part has been keeping the scale consistent even when my baseline amount of anxiety seems to change.
jimkleiber 5y ago
I built an app for emotional journaling back around 2012 called iFeelio[0]. One of the reasons I've stopped working on it was the fear I had that it would get hacked. Despite having it be local-only (no permission to connect to the internet on Android) and using an encrypted database, I worried about nation-state/NSO-like hacking and how it could be much worse than WhatsApp or an encrypted messenger getting hacked. That being said, seeing so many people create apps for emotions without taking such a a stringent approach frustrates me and has me thinking about revamping the app. If anyone reading this is interested, please reach out to me at the email in my profile and I'd be glad to chat. Or just comment here and I'll reply :-) [0]: http://www.iFeelio.com http://www.iFeelio.com
- GekkePrutser 5y ago
  Your precautions in particular no internet access and encrypted db sound really thorough. The end users will probably have ended up using less secure alternatives like a cloud driven alternative or the standard notetaking app on their phones. Let's just take for granted that if a nation state actor wants too spy on someone they'll do so one way or another. In the end the end users would be worse off with the alternatives as you say. However you mentioned it wasn't the only reason. And of course litigation is a danger with these things.
  - jimkleiber 5y ago
    > In the end the end users would be worse off with the alternatives as you say. I really appreciate this point. It helps me reflect on the cost of inaction: "If people are going to use apps like this anyway, you not building the app may hurt them but not giving them a more secure option." > Let's just take for granted that if a nation state actor wants too spy on someone they'll do so one way or another. > And of course litigation is a danger with these things. Yea, I suppose if they were to hack into iOS or Android to access a local-only encrypted file, then those two platforms may be equally if not more liable than I would be. So maybe the legal aspects wouldn't be so bad.
- cupcake-unicorn 5y ago
  We need more stuff like this! Daylio is another good one that is local only with an option to back up to your Google account.
throwawayfear 5y ago
I am not convinced these are safe to use. I am concerned they just report back to your employer, when they are provided as a benefit, so they can “better manage attrition.” Or to large data brokers otherwise. Unless these tools are open source and can be compiled from the source, I don’t want to entrust them with my emotions or thoughts.
- throwaway81523 5y ago
  What the heck do these apps actually do anyway? Are they ELIZA As A Service, or what? I am the mental health app. Please, describe your problems. Each time you are finished talking, type RET twice.
  - amelius 5y ago
    GPT-3 as your personal psychoanalyst.
thepasswordis 5y ago
Something I really worry about with these apps is that they now have a financial incentive to find more people with mental health issues. Mental health issues can spread socially: https://en.wikipedia.org/wiki/Social_contagion https://en.wikipedia.org/wiki/Social_contagion There is a term used in a theraputic setting called catastrophizing: https://www.psychologytoday.com/us/basics/catastrophizing https://www.psychologytoday.com/us/basics/catastrophizing I worry that these apps encourage people to catastrophize things, which is good for their profits, and bad for the mental health of their customers. I find it difficult to imagine a scenario where one of these app makers doesn't find a mental health issue that you need help with (and to pay them for). That sort of "diagnoses" can cause you to develop the disorder that they have diagnosed you with. It's an extremely treacherous situation.
- dymk 5y ago
  Your linked wikipedia article describes behaviors or emotions spreading through social groups, but this doesn't mean that mental illness spreads through social groups. "Contagion" doesn't mean "illness", it means "meme". Is there actually research showing that mental illnesses spread through social groups?
  - thepasswordis 5y ago
    I'm not sure I understand what you're saying here. Behaviors and emotions are descriptive of the "issue" part of mental health issues. Behaviors and emotions are the symptoms.
    - dymk 5y ago
      I think I'm not understanding your initial point - are you saying that these apps need to find people with mental health issues (which makes sense), or that these apps are incentivized to start inducing mental health issues in people in order to increase their customer base, and that's something we need to worry about? I see in your initial comment, you talk about these apps diagnosing people and that causing somebody to develop the actual disease (I guess like a reverse placebo).
Exendroinient 5y ago
Till the incentive to profiting from and creating a mental health problems nothing will change.
winrid 5y ago
Some also claim to be AI powered but just have people responding behind the scene... I guess for higher evaluations.
ryanSrich 5y ago
My phone use is responsible for 99% of any mental health issues I might face. The idea of solving a mental health issue with an app is crazy to me. Like treating drug addiction with more drugs (which I’m aware is a thing).
- jimkleiber 5y ago
  At least for some things, which I'd call more emotional health rather than mental health, I think it's possible. When I was developing an app for this about 10 years ago, my goal was precisely that: use the phone to check in more with myself and less with other people. I even hacked together a solution on Android where when I would receive a notification from Facebook or Whatsapp or whatever, I would also trigger a notification from the app to checkin with myself. Basically hijacking the attention seeker from the social media network and trying to redirect it towards myself. While that little notification hijacking didn't seem to help much, the app I built for journaling really helped me get more in touch with how I was feeling and feel more confident in my ability to express it.
pm90 5y ago
I will absolutely never use a digital service for mental health. There have been breach of personal data with very little consequences for the leakers. Mental health/wellness data is also an incredible data set to mine for targeting ads (as others have pointed out). This is also the main reason I use a paper notebook as my diary for journaling. I’m ok with the trade off of not having backups: the alternative of this data being mined and leaked online is not a risk I’m willing to take. In fact, I simply don’t feel comfortable writing online honestly at all, my brain is conditioned to believe anything in the cloud is simply not secure.
- worik 5y ago
  >my brain is conditioned to believe anything in the cloud is simply not secure Technically untrue, but true nonetheless. There are a lot of techniques for ensuring the security of data. Techniques where even the supplier of the service cannot access your data. But they do not add (in the general case) to the bottom line. In another generation (or two) users may get educated to insist on it. But for now the refrain "I have nothing to hide, why should I care about privacy?" is very common. My reply is "you have nothing to hide, now. When you do it will be too late". I have a lot of empathy for Cassandra!
hartem_ 5y ago
https://archive.md/20211220222717/https://www.economist.com/business/2021/12/11/dramatic-growth-in-mental-health-apps-has-created-a-risky-industry https://archive.md/20211220222717/https://www.economist.com/...
heavyset_go 5y ago
Privacy is the most obvious concern that comes to mind with apps like these, but I feel like there are potentially even bigger problems. Companies are shielded from a significant amount of liability by using apps. If a company positions itself such that its mental health practitioners and patients are both users, then Section 230 of the CDA shields the app owners from almost all liability for what happens on their app. If, for example, and doctor commits malpractice or otherwise does something illegal, the company that runs the app has absolutely no legal obligation to do anything about it as they have no liability when it comes to how users use their service. This has had some pretty horrifying results in the US, and courts all the way up the the Supreme Court[1] have confirmed that, as per the CDA, operators of interactive computer services are shielded from liability for user content and actions, even if those computer services are knowingly used for fraud and assault[1]. Also, these app-based marketplaces further commodify the mental health profession. Look at any app-based marketplace or employer. Is quality what comes to mind? To me, what I see is a race to the bottom in terms of quality and compensation to sellers or workers. I think a Wish.com, but for psychiatrists, will become exactly that. Whoever owns the apps will make a lot of money, though. [1] https://www.lawfareblog.com/herrick-v-grindr-why-section-230-communications-decency-act-must-be-fixed https://www.lawfareblog.com/herrick-v-grindr-why-section-230...
_moof 5y ago
I can't believe anyone takes these apps seriously. Of all the things wrong with mental health care, "a shortage of apps" was not even in the running to make the list. Talk to someone who has struggled with depression for decades and tell me if you think an app is going to help. Or look at the inhumane treatment people receive in inpatient settings, and the failure to make even the most basic follow-ups after they're released (other than a letter from the hospital asking for a donation). Read any first-person account of mental illness and you will see a picture of desperate suffering with needs barely and inconsistently met by a condescending industry that can't even figure out what it is they're treating or how to treat it with any reliability. It's a horrible situation, and it's not going to be solved by an app.
say_it_as_it_is 5y ago
These service providers largely don't even offer licensed medical doctors but social workers. Licensed psychologists charge professional rates and avoid transactional experiences.
lukeh 5y ago
Slightly OT, but here's a mood tracking app I wrote (on-topic inasmuch as it's free, and collects absolutely no data notwithstanding using CloudKit to synchronise state). https://www.moodcircle.me https://www.moodcircle.me I wrote it to learn SwiftUI, hardly anyone uses it, but it was fun to develop.
iamleppert 5y ago
I was scammed by Talkspace. After I signed up, I was never able to actually talk to anyone. I paid almost $500, and every time I would go into book a time to talk to my therapist, their calendar would be unavailable. I would then contact the therapist via the messaging feature and be told to try earlier in the week next week. I tried this for several weeks before switching therapists. I did this several times with the same result each time. Every time I would be able to easily message the therapist and get a response, but when it came to actually booking a video appointment, they were conveniently unavailable. I finally grew frustrated and cancelled my account, and requested a refund. A few days later I received a confirmation with no refund. I sent a support message and received a link to an FAQ page that said I “wasn’t eligible for a refund”. How can it be that a company feels comfortable taking almost $500 and literally providing no service at all? Finally after several weeks and starting a charge back process with my bank, I received a refund. Looking back, the “messages” I received from the “therapists” and “match agents” had a distinct bot feeling to them. I wouldn’t be shocked if they were fully or partially automated. It’s unconscionable to pray upon people trying to get therapy, but something tells me that’s exactly what many of these companies are doing: they just expect you to forget about it and once the 90 day dispute window is up, you’re out of luck. I will never again use one of these online services (likely VC-backed and tech heavy). They are taking advantage of people with depression and mental illness for profit. Judging by other experiences I’ve found online, I’m not the only one.
- heavyset_go 5y ago
  > It’s unconscionable to pray upon people trying to get therapy, but something tells me that’s exactly what many of these companies are doing: they just expect you to forget about it and once the 90 day dispute window is up, you’re out of luck. They also expect vulnerable populations of people with untreated/under-treated mental illness won't advocate for themselves as much as other populations, and they're probably right. It's gross. With regard to your experience with Talkspace, consider reporting them to your state's consumer board and Attorney General.
- medstrom 5y ago
  It's particularly unconscionable because people who need therapy are likely less able to defend themselves against scamming, e.g. the depressed will just not have the energy to start the charge-back process or feel they're getting what they deserve anyway.
yholio 5y ago
Mental illness is by its very definition debilitating, leaving the suffering unable to help themselves. Those battling with depression, schizophrenia, bipolar issues, addiction often lose or are on the verge of losing their jobs and friends, possessions, homes, control of their lives. These types of issues just scream for a social safety net and free treatment for those who need it: we all pay income tax when things are good, so that there is somebody there to help us when things turn bad, even if we have no money, even if we are unable to ask for help, even if, on the heights of despair and irrationality, we staunchly reject help. It's a telling sign of the times that, instead of talking about social solidarity, pure market driven solutions that profit by charging their patients are taken seriously in this space.
deleted 5y ago
[deleted]

191 points by axiomdata316 5y ago

I might be wrong but in EU any app that is going to give you advice about health improvement etc is considered a medical device and regulated accordingly. As long it just tracks and shows you data, it's not a medical device.

rchaud 5y ago

I worked for a mental health software startup until 2017, and even then it was worrying how many market entrants didn't seem to bother with clinical guidelines to mental health. The modern crop of tools are jamming together elements of Uber/Doordash and online dating apps....wellness on demand! Swipe right on your preferred therapist! Most users that haven't gone to therapy or read how CBT works won't know that much of actual therapy is boring homework. You're not paying to vent to a sympathetic ear. You are discussing your issues and then doing homework where you identify negative thinking patterns, and the daily triggers that launch those thoughts. That is not something that should be done through the equivalent of a Drift chatbot, but rather through scheduled, regular conversations. The CEO of my former company was a practicing psychiatrist who resisted the "gamified" nature of modern wellness apps, and set up the software to use DSM-5 criteria for assessing issues. Based on the info provided, it generated a PDF with symptoms related to recognized disorderds, which were to be discussed with a general practitioner at their next appointment. It wasn't supposed to replace the role of actual therapy, but rather to provide decision support to both patients and care providers.

Borrible 5y ago

Having worked in health care for service provider like hospitals, medical offices and health care IT/Data Management/Analysis for health insurance funds, I would consider myself crazy to touch those apps with a ten foot pole, even if in dire need. But then again, I'm one of those mentally healthy bastards having worked for them and stayed sane. Paranoid that is. It probably would be a start to encrypt the data down to field level. Not everybody in IT and data mangling needs to know them. But then again, who cares? Or rather more important, who pays? But there is a buck to be made for sure.

rbartelme 5y ago

https://archive.md/pog41 https://archive.md/pog41

eganist 5y ago

disclosure: I hold an equity position in an end to end encrypted, trust on first use communications app, not really relevant to this conversation so no value in naming them. I'm not terribly surprised at the number of services that have popped up in the last few years, but considering the sensitivity of the data (in many cases, info that most would consider to be some of our deepest feelings on a topic that we wouldn't want just anyone to hear about), I'm surprised at the lack of ventures working to distance themselves from the content of the conversations. It just feels like in this specific niche, protection of data would be a much bigger selling point than most others. I'd imagine any suitably well-funded chat service with end to end encryption could fund a subsidiary venture to build out a therapy-focused implementation of such, and especially in the world of therapy, hand-written notes would probably be preferred anyway, so there shouldn't be much in the way of storage of data aside from directory data for individual users of the service and probably card transaction pointers to a third party processor, plus a handful of other bits that still shouldn't be anywhere near as compromising as actual contents of conversation. Open to discussion on the topic. There's probably an angle I'm not seeing.

rbartelme 5y ago
I think it might depend on whether or not U.S. insurance companies are involved. If so HIPAA is a real liability as a company. For example, a former colleague worked at a high profile private research facility that had their HIPAA firewall breached and their entire department was fired. Assuming that chat logs on these apps could fall into that same class of data in the U.S., that's a huge amount of risk/liability as a company.
ChrisMarshallNY 5y ago
Folks may remember this little nightmare: https://www.politico.eu/article/cybercriminal-extorts-finnish-therapy-patients-in-shocking-attack-ransomware-blackmail-vastaamo/ https://www.politico.eu/article/cybercriminal-extorts-finnis... Sometimes, it's a good idea to keep things off computers, unless you can be sure of the quality and security (which is a challenge. Everyone says they are "secure," but we keep having clusterf**ks like this).
DarylZero 5y ago

tjpnz 5y ago

Honestly, one of the best things you can do for your mental health is to spend less time in front of a screen.

Pigalowda 5y ago

From the article: “No universal standards for storing “emotional data” exist. John Torous of Harvard Medical School, who has reviewed 650 mental-health apps, describes their privacy policies as abysmal. Some share information with advertisers. “When I first joined BetterHelp, I started to see targeted ads with words that I had used on the app to describe my personal experiences,” reports one user” >I could drum up a dark fantastical setting of HR departments buying this data and screening candidates with it. Hopefully this patient data gets HIPAA treatment and is more protected.

SkyPuncher 5y ago
Most of these apps aren't protected by HIPAA.
- nopenopenopeno 5y ago
  Why is that?
  - ozzyman700 5y ago
    You can see here [2] what entities HIPPA applies to. A app would probably fall under the rightmost "clearinghouse" column. But, that is only if the app receives data from another cover entity. If the app uses data provided voluntarily from and by the user to the app, the app is not a covered entity. [1] [1] https://blog.focal-point.com/when-does-hipaa-apply-to-health-apps https://blog.focal-point.com/when-does-hipaa-apply-to-health... [2] https://www.hhs.gov/hipaa/for-professionals/covered-entities/index.html https://www.hhs.gov/hipaa/for-professionals/covered-entities...
    - nopenopenopeno 5y ago
      This is a big help! Thanks. Aren’t the apps just matching providers and hosting communication? In which case the providers fall under the first column? At some point, there must be a provider, right?
- 5y ago

ImaCake 5y ago

The problem is that there is no requirement for these apps to actually work. They might work, or might not. But that doesn’t really impact whether scientists get grants. They make the funders/government look like they care about mental health and these apps are cheap compared to more traditional mental health and psychiatric therapies. The scientists are desperate for the next round of grants funding and are happy to produce something that makes the government funding them look good. This kind of thing is pretty common in science. It can be hard to see from the outside, but it is so obvious once you have been involved in grant writing.

rdtwo 5y ago
Well to be honest there is no requirement for mental health treatment to be evidence based so there are a ton on providers that are basically witch doctors. You need to screen hard because state licensing only protects you from harm does not ensure providers actually offer services that work.
walleeee 5y ago
used to work in a lab focused on this sort of thing and the money did indeed flow for personalized e-health and digital interventions mediated by smartphone or browser interface maybe things have changed since but I didn't see much incentive for the researchers involved to compare the long term effects of this form of treatment to other options or stop and wonder about the implications, although I'm certain some would like to given a different funding landscape

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uptownfunk 5y ago

You know what's probably harmed my mental health the most during this pandemic? Slack.

_jal 5y ago

My company started offering one of these, and wanted permission to disclose... something (never figured out if it was just name/email, or more) to them to onboard me. I asked about data use, including disclosure back to my employer, and never got more than a pointer to their (predictably useless) privacy policy. They (the vendor) deliberately avoided answering anything related to disclosure. How many different angles have we seen on, "...and if we hoover up enough data, profit!" So, thanks, but no thanks.

heavyset_go 5y ago
> How many different angles have we seen on, "...and if we hoover up enough data, profit!" Even doctor's offices do this now. I've been to a few that ask you to sign away your rights to privacy so that they can sell your medical information to their partners. It's gross.
aahortwwy 5y ago
> How many different angles have we seen on, "...and if we hoover up enough data, profit!" Something I see happen all the time: 1. Organization hoovers up data incidentally as they build a product. 2. Privacy concerns are raised internally, but the organization genuinely has no intention of misusing the data so concerns aren't taken seriously and they're not addressed. 3. Some years pass (sometimes only one or two). 4. Newcomers to the organization now start misusing the data because, hey, it's there. If you have it, why not use it?
- neon_electro 5y ago
  I witnessed 1, 2, and 3 at my previous job (not mental health data but the data I was concerned about was just as personal and vulnerable to abuse), praying 4 never happens but given the company’s been acquired, I’m not optimistic things will get better. Glad to have moved on from that company.
- _jal 5y ago
  Yep. When I point this pattern out in other contexts (like talking about how instrumentation can become surveillance after collection), people get upset with me.

ok_dad 5y ago

I'm surprised that this doesn't fall close to the FDA's approval process for medical devices. When I worked at a medical device company and had external training on the requirements, they specified that even a toothbrush could be considered a class 1 medical device[0][1], worthy of a 510k filing. Maybe the apps in question are simply "communications programs" for communications between doctors/therapists and patients, but in that case it seems like HIPAA would apply to these. If they have any algorithms whatsoever, they are definitely medical devices, IMO, though I couldn't find a classification for anything like a "mental health algorithm software" type device. It could be that mental health apps are a gap that the FDA hasn't closed yet? Overall, it seems to be just another case of "move fast and break things" where the "things" are laws. I am not impressed by the corporate greed that seems to be driven by the insane amounts of venture capitalism we have today. To me, it seems like commercial activity in every industry has been hit with an "unethical stick" and all anyone cares about is $$$$$$$$$$$$$$$$$$$$$$$$$. [0] https://www.fda.gov/medical-devices/overview-device-regulation/classify-your-medical-device https://www.fda.gov/medical-devices/overview-device-regulati... [1] search "toothbrush" here: https://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfpcd/classification.cfm https://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfpcd/cla... [none] see "floss" for dental floss, another class 1 medical device: https://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfpcd/classification.cfm?id=1311 https://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfpcd/cla...

SkyPuncher 5y ago
> in that case it seems like HIPAA would apply to these. HIPAA is significantly more limited than most people think. Basically, if insurance isn't involved than HIPAA isn't legally required.
- Red_Leaves_Flyy 5y ago
  Not asking for legal advice, but generally speaking, if insurance pays for app based therapy then it must be HIPPA compliant?
  - SkyPuncher 5y ago

lbrito 5y ago

I always thought of these apps as a sketchy byproduct of US's weird/malfunctioning health system -- kind of like how people use painkillers to forget about their toothache instead of going to a dentist. Can't pay for a medical doctor to treat your mental health condition? Here's an app!

ch4s3 5y ago
People are not on any meaningful scale in the US using pain killers to avoid dental care, unless you mean something like aspirin. Or rather, as someone who worked in public health related tech for many years, I've never see any data or heard anyone mention anything like that.
- markdown 5y ago
  > People are not on any meaningful scale in the US using pain killers to avoid dental care, unless you mean something like aspirin. You've contradicted yourself there. "They aren't, but they are with this one painkiller."
  - blululu 5y ago
    Not really a big contradiction unless you want to be really pedantic. Over the counter painkillers and prescription painkillers are very different beasts. Painkillers as a social ill pretty much exclusively refers to the latter. Nobody would say “I’m on painkillers” while taking aspirin.
    - markdown 5y ago
      > Nobody would say “I’m on painkillers” while taking aspirin. Really? That's exactly what one would say in my country... though they'd more likely to be talking about paracetamol. The strongest one that most people know about is Panadeine Forte (paracetamol + codeine).
  - ch4s3 5y ago
    People usually mean something else by "painkillers", and I wnet on to explain that there doesn't seem to be any evidence behind the claim.

viburnum 5y ago

Same goes for conventional therapy. "Failure to Measure" is #1 on the list: https://feelinggood.com/2018/12/24/120-ten-worst-errors-therapists-make/ https://feelinggood.com/2018/12/24/120-ten-worst-errors-ther...

jodrellblank 5y ago
I love Dr Burns' work. I sometimes wonder if a company which wanted to provide good customer service would do Testing at the start and end of every support case. (And not "how did we do?" email surveys which mean "punish the call handler for anything less than 5 stars")
jasonhansel 5y ago
Speaking of cybersecurity and shady marketing tactics: that website offers a "free depression test," but when you fill out the survey, they tell you that you have to give them your email address to see the results. Meaning that the test results are sent over unencrypted email.
- jimkleiber 5y ago
  I think at some level, if strong security / end-to-end encryption is not seamlessly baked into the products we already use, things like this may keep happening. I don't know too many emotional health professionals who are also very knowledgeable in cybersecurity, so people may just use the defaults. Which is why I like Signal and WhatsApp (to some extent) for doing it behind the scenes. I'm willing to bet most people have no idea how public email tends to be.
cobertos 5y ago
My therapist hasn't done this, but I do find the decompression of therapy to usually reflect how valuable it was to me anyway. Tracking my anxiety with Daylio has really helped as well. Gives me much better metrics for how my anxiety changes over time and with different medications. Hardest part has been keeping the scale consistent even when my baseline amount of anxiety seems to change.

jimkleiber 5y ago

I built an app for emotional journaling back around 2012 called iFeelio[0]. One of the reasons I've stopped working on it was the fear I had that it would get hacked. Despite having it be local-only (no permission to connect to the internet on Android) and using an encrypted database, I worried about nation-state/NSO-like hacking and how it could be much worse than WhatsApp or an encrypted messenger getting hacked. That being said, seeing so many people create apps for emotions without taking such a a stringent approach frustrates me and has me thinking about revamping the app. If anyone reading this is interested, please reach out to me at the email in my profile and I'd be glad to chat. Or just comment here and I'll reply :-) [0]: http://www.iFeelio.com http://www.iFeelio.com

GekkePrutser 5y ago
Your precautions in particular no internet access and encrypted db sound really thorough. The end users will probably have ended up using less secure alternatives like a cloud driven alternative or the standard notetaking app on their phones. Let's just take for granted that if a nation state actor wants too spy on someone they'll do so one way or another. In the end the end users would be worse off with the alternatives as you say. However you mentioned it wasn't the only reason. And of course litigation is a danger with these things.
- jimkleiber 5y ago
  > In the end the end users would be worse off with the alternatives as you say. I really appreciate this point. It helps me reflect on the cost of inaction: "If people are going to use apps like this anyway, you not building the app may hurt them but not giving them a more secure option." > Let's just take for granted that if a nation state actor wants too spy on someone they'll do so one way or another. > And of course litigation is a danger with these things. Yea, I suppose if they were to hack into iOS or Android to access a local-only encrypted file, then those two platforms may be equally if not more liable than I would be. So maybe the legal aspects wouldn't be so bad.
cupcake-unicorn 5y ago
We need more stuff like this! Daylio is another good one that is local only with an option to back up to your Google account.

throwawayfear 5y ago

I am not convinced these are safe to use. I am concerned they just report back to your employer, when they are provided as a benefit, so they can “better manage attrition.” Or to large data brokers otherwise. Unless these tools are open source and can be compiled from the source, I don’t want to entrust them with my emotions or thoughts.

throwaway81523 5y ago
What the heck do these apps actually do anyway? Are they ELIZA As A Service, or what? I am the mental health app. Please, describe your problems. Each time you are finished talking, type RET twice.
- amelius 5y ago
  GPT-3 as your personal psychoanalyst.

thepasswordis 5y ago

Something I really worry about with these apps is that they now have a financial incentive to find more people with mental health issues. Mental health issues can spread socially: https://en.wikipedia.org/wiki/Social_contagion https://en.wikipedia.org/wiki/Social_contagion There is a term used in a theraputic setting called catastrophizing: https://www.psychologytoday.com/us/basics/catastrophizing https://www.psychologytoday.com/us/basics/catastrophizing I worry that these apps encourage people to catastrophize things, which is good for their profits, and bad for the mental health of their customers. I find it difficult to imagine a scenario where one of these app makers doesn't find a mental health issue that you need help with (and to pay them for). That sort of "diagnoses" can cause you to develop the disorder that they have diagnosed you with. It's an extremely treacherous situation.

dymk 5y ago
Your linked wikipedia article describes behaviors or emotions spreading through social groups, but this doesn't mean that mental illness spreads through social groups. "Contagion" doesn't mean "illness", it means "meme". Is there actually research showing that mental illnesses spread through social groups?
- thepasswordis 5y ago
  I'm not sure I understand what you're saying here. Behaviors and emotions are descriptive of the "issue" part of mental health issues. Behaviors and emotions are the symptoms.
  - dymk 5y ago
    I think I'm not understanding your initial point - are you saying that these apps need to find people with mental health issues (which makes sense), or that these apps are incentivized to start inducing mental health issues in people in order to increase their customer base, and that's something we need to worry about? I see in your initial comment, you talk about these apps diagnosing people and that causing somebody to develop the actual disease (I guess like a reverse placebo).

Exendroinient 5y ago

Till the incentive to profiting from and creating a mental health problems nothing will change.

winrid 5y ago

Some also claim to be AI powered but just have people responding behind the scene... I guess for higher evaluations.

ryanSrich 5y ago

My phone use is responsible for 99% of any mental health issues I might face. The idea of solving a mental health issue with an app is crazy to me. Like treating drug addiction with more drugs (which I’m aware is a thing).

jimkleiber 5y ago
At least for some things, which I'd call more emotional health rather than mental health, I think it's possible. When I was developing an app for this about 10 years ago, my goal was precisely that: use the phone to check in more with myself and less with other people. I even hacked together a solution on Android where when I would receive a notification from Facebook or Whatsapp or whatever, I would also trigger a notification from the app to checkin with myself. Basically hijacking the attention seeker from the social media network and trying to redirect it towards myself. While that little notification hijacking didn't seem to help much, the app I built for journaling really helped me get more in touch with how I was feeling and feel more confident in my ability to express it.

pm90 5y ago

I will absolutely never use a digital service for mental health. There have been breach of personal data with very little consequences for the leakers. Mental health/wellness data is also an incredible data set to mine for targeting ads (as others have pointed out). This is also the main reason I use a paper notebook as my diary for journaling. I’m ok with the trade off of not having backups: the alternative of this data being mined and leaked online is not a risk I’m willing to take. In fact, I simply don’t feel comfortable writing online honestly at all, my brain is conditioned to believe anything in the cloud is simply not secure.

worik 5y ago
>my brain is conditioned to believe anything in the cloud is simply not secure Technically untrue, but true nonetheless. There are a lot of techniques for ensuring the security of data. Techniques where even the supplier of the service cannot access your data. But they do not add (in the general case) to the bottom line. In another generation (or two) users may get educated to insist on it. But for now the refrain "I have nothing to hide, why should I care about privacy?" is very common. My reply is "you have nothing to hide, now. When you do it will be too late". I have a lot of empathy for Cassandra!

hartem_ 5y ago

https://archive.md/20211220222717/https://www.economist.com/business/2021/12/11/dramatic-growth-in-mental-health-apps-has-created-a-risky-industry https://archive.md/20211220222717/https://www.economist.com/...

heavyset_go 5y ago

Privacy is the most obvious concern that comes to mind with apps like these, but I feel like there are potentially even bigger problems. Companies are shielded from a significant amount of liability by using apps. If a company positions itself such that its mental health practitioners and patients are both users, then Section 230 of the CDA shields the app owners from almost all liability for what happens on their app. If, for example, and doctor commits malpractice or otherwise does something illegal, the company that runs the app has absolutely no legal obligation to do anything about it as they have no liability when it comes to how users use their service. This has had some pretty horrifying results in the US, and courts all the way up the the Supreme Court[1] have confirmed that, as per the CDA, operators of interactive computer services are shielded from liability for user content and actions, even if those computer services are knowingly used for fraud and assault[1]. Also, these app-based marketplaces further commodify the mental health profession. Look at any app-based marketplace or employer. Is quality what comes to mind? To me, what I see is a race to the bottom in terms of quality and compensation to sellers or workers. I think a Wish.com, but for psychiatrists, will become exactly that. Whoever owns the apps will make a lot of money, though. [1] https://www.lawfareblog.com/herrick-v-grindr-why-section-230-communications-decency-act-must-be-fixed https://www.lawfareblog.com/herrick-v-grindr-why-section-230...

_moof 5y ago

I can't believe anyone takes these apps seriously. Of all the things wrong with mental health care, "a shortage of apps" was not even in the running to make the list. Talk to someone who has struggled with depression for decades and tell me if you think an app is going to help. Or look at the inhumane treatment people receive in inpatient settings, and the failure to make even the most basic follow-ups after they're released (other than a letter from the hospital asking for a donation). Read any first-person account of mental illness and you will see a picture of desperate suffering with needs barely and inconsistently met by a condescending industry that can't even figure out what it is they're treating or how to treat it with any reliability. It's a horrible situation, and it's not going to be solved by an app.

say_it_as_it_is 5y ago

These service providers largely don't even offer licensed medical doctors but social workers. Licensed psychologists charge professional rates and avoid transactional experiences.

lukeh 5y ago

Slightly OT, but here's a mood tracking app I wrote (on-topic inasmuch as it's free, and collects absolutely no data notwithstanding using CloudKit to synchronise state). https://www.moodcircle.me https://www.moodcircle.me I wrote it to learn SwiftUI, hardly anyone uses it, but it was fun to develop.

iamleppert 5y ago

I was scammed by Talkspace. After I signed up, I was never able to actually talk to anyone. I paid almost $500, and every time I would go into book a time to talk to my therapist, their calendar would be unavailable. I would then contact the therapist via the messaging feature and be told to try earlier in the week next week. I tried this for several weeks before switching therapists. I did this several times with the same result each time. Every time I would be able to easily message the therapist and get a response, but when it came to actually booking a video appointment, they were conveniently unavailable. I finally grew frustrated and cancelled my account, and requested a refund. A few days later I received a confirmation with no refund. I sent a support message and received a link to an FAQ page that said I “wasn’t eligible for a refund”. How can it be that a company feels comfortable taking almost $500 and literally providing no service at all? Finally after several weeks and starting a charge back process with my bank, I received a refund. Looking back, the “messages” I received from the “therapists” and “match agents” had a distinct bot feeling to them. I wouldn’t be shocked if they were fully or partially automated. It’s unconscionable to pray upon people trying to get therapy, but something tells me that’s exactly what many of these companies are doing: they just expect you to forget about it and once the 90 day dispute window is up, you’re out of luck. I will never again use one of these online services (likely VC-backed and tech heavy). They are taking advantage of people with depression and mental illness for profit. Judging by other experiences I’ve found online, I’m not the only one.

heavyset_go 5y ago
> It’s unconscionable to pray upon people trying to get therapy, but something tells me that’s exactly what many of these companies are doing: they just expect you to forget about it and once the 90 day dispute window is up, you’re out of luck. They also expect vulnerable populations of people with untreated/under-treated mental illness won't advocate for themselves as much as other populations, and they're probably right. It's gross. With regard to your experience with Talkspace, consider reporting them to your state's consumer board and Attorney General.
medstrom 5y ago
It's particularly unconscionable because people who need therapy are likely less able to defend themselves against scamming, e.g. the depressed will just not have the energy to start the charge-back process or feel they're getting what they deserve anyway.

yholio 5y ago

Mental illness is by its very definition debilitating, leaving the suffering unable to help themselves. Those battling with depression, schizophrenia, bipolar issues, addiction often lose or are on the verge of losing their jobs and friends, possessions, homes, control of their lives. These types of issues just scream for a social safety net and free treatment for those who need it: we all pay income tax when things are good, so that there is somebody there to help us when things turn bad, even if we have no money, even if we are unable to ask for help, even if, on the heights of despair and irrationality, we staunchly reject help. It's a telling sign of the times that, instead of talking about social solidarity, pure market driven solutions that profit by charging their patients are taken seriously in this space.

deleted 5y ago

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