Are mental health apps better or worse at privacy in 2023?
foundation.mozilla.org
foundation.mozilla.org
https://www.nytimes.com/2022/09/20/opinion/us-mental-health-...
> "That the status quo is once again benefiting the usual suspects is all too obvious in the booming market of venture-capital-backed mental health tech start-ups that promise to solve the crisis through a gig economy model for psychiatric care — a model that has been criticized for selling psychiatric medication irresponsibly, with little accountability..."
> "And yet when the plan addresses suicide, it focuses on crisis intervention — as if suicide were a kind of unfortunate natural occurrence, like lightning strikes, rather than an expression of the fact that growing numbers of people are becoming convinced that the current state of affairs gives them no reason to hope for a life they’d want to live..."
P.S. Another good read:
https://en.wikipedia.org/wiki/Political_abuse_of_psychiatry_...
Historical societal failures in the Soviet Union have many interesting similarities to current societal failures in the United States.
Because yeah, that's dystopian as hell, not to mention dehumanising.
There are also a lot of mental health problems not caused by these things. :)
And I speak from experience after going to therapy for my anxiety. I guess it sort of helped, but also I could very easily imagine a world where the whole problem wouldn't have existed in the first place - it's just not the world that we live in.
Concerned about the latest reports on ocean warming? Well, climate change has been happening for a while!
Concerned about the AI-fuelled destruction of art and writing as middle-class careers? Don't worry, artists have been poor for quite a while!
It's possible (and, indeed, likely) that:
- Things have gotten progressively worse
- There is a tipping point, after which the system will undergo a phase change; i.e. the difference between making rent and not making rent
- We are now much closer to that point than we were
Expected response is, "oh fsck, that makes the current situation even worse, I should definitely care about it!" Response I see instead is, "well that's old news."
(So, call this the Old News Defense.)
What is fascinating to me is the frequency with which this defense is thrown up. I'm pretty sure that if we got hit by an asteroid, someone would be commenting, "don't worry, we've been getting hit with asteroids since Chicxulub, stop being alarmist"
It's probably worth examining where this reflexive response comes from. The person you're replying to didn't defend anything. The comment was just that the trend predates the past couple of decades.
If that's not what's going on here, I apologize -- but yes, it's a strong HN tendency. It's a sort of machismo stance that derides alarm as alarmism, and it's quite popular here. Cf. HN comments on pretty much any article on AI from the past three months.
Definitely agree that human therapists aren't perfect either. I never had much success with therapy personally. I've had to basically figure it all out myself. But I have occasionally had some really good therapy sessions.
But ok, at least with a therapist, another human being cares enough to want to help, and that can make a difference.
Tell a heavily depressed person to use a chat bot, and you're implicitly telling them they're so worthless that they're not even worth another human having a conversation with them. You might not mean that, but that is what the depressed mind will read into it.
Usually there's money involved, no?
Also, therapists usually have long referral lists, so they still have to decide that you're worth their time and that they believe they can help you.
That's sort of my point. They don't actually care, they help you because you pay them. I don't know if it's how I grew up or what, but this is somehow off-putting to me. I mean, I'm not against paying for services in general, but the sort of human interaction that therapy provides seems me like something that we should be able to get without money.
But I would argue against the "don't actually care" angle. They do, they would not have devoted years of their life to a quite miserable role if they didn't care about helping people. Their expertise matters, just like any other role in life, and it's what you're paying for.
I do not expect therapy to be like friendship and friendships can not provide the kind of help therapy is supposed to provide. Friends can try and give you huge amount of contra productive advice or judge you, simply because they do not understand the kind of issues therapy deals with.
The socially superior periods had also much higher substance (including alcohol) abuse rates ... and non-triavial part of that was self-medication.
Feedback from user testing has been great, patients loved it generally.
Visited a psych ward once (because suicidal idealization was happening and I wanted/asked for help for the first time in my life).
Well if my experience in one of those facilities is not an uncommon one, then they are horrifyingly dehumanizing and actually cause harm to other people (this is what I observed).
A big problem in facilities is that the information they receive will determine more of what they will do/prescribe than what the patient is actually asking for.
I watched transgendered patients be purposely miss gendered by staff. Countless other patients being otherwise ignored or treated like anything they have to say doesn't matter because of where they are or the diagnosis that they have.
For myself I was told I was schizophrenic and prescribe meds with terrible side effects because my parents told that to the admit facility. No treatment for depression and anxiety was really given (which is what I was saying I wanted), I was ignored by the therapist and social worker assigned to me, and the contact that I wished to hear from was conveniently removed from my file.
Therapists and support staff in the public sector outside of a mental hospital are grossly underpaid, thus only the inexperienced and inept (with a few people that care too much for their own good) are the ones likely to be working in Federally funded health centers.
Mental Healthcare is a abysmal joke in the United States. Suicide is very easily a valid and top choice here.
> I watched transgendered patients be purposely miss gendered by staff. Countless other patients being otherwise ignored or treated like anything they have to say doesn't matter because of where they are or the diagnosis that they have.
> For myself I was told I was schizophrenic and prescribe meds with terrible side effects because my parents told that to the admit facility. No treatment for depression and anxiety was really given (which is what I was saying I wanted), I was ignored by the therapist and social worker assigned to me, and the contact that I wished to hear from was conveniently removed from my file.
If you had the capacity to self-direct your care, you wouldn't have needed to be in a mental hospital in the first place. You would have done the rational thing and sought help from somewhere other than a crisis intervention center. You were clearly also a minor at the time. Mental hospitals do suck for many reasons but your expectations are/were unrealistic.
As an adult, you'll have the same experience declaring bankruptcy and bemoaning why nobody will give you a credit card. "Helping" you means trusting someone else to pull you out of the pit and not letting you jump right back into it. Sometimes that means not letting you make phone calls with whoever on the outside contributed to your being there.
I don't disagree with your opinion that it's all a joke (especially for what it costs; just send your ass to summer camp) but the solution is not to literally let the lunatics run the asylum. Go to Discord for that.
I was an adult and my parents were abusing me and have proven throughout my life that they do not have my best interest at heart.
The hospital lied repeatedly to me and others and is as well documented and reviewed for it by many others.
For me, therapy was very similar to private tutoring sessions. I did almost all of the work. Took about a year to nail down all of the corners. Haven't had to go back since.
In an ideal world, therapists should be no different from personal trainers. No one really questions having someone help you learn how to exercise. Learning how to handle your mental hardware should be the same way.
Granted, we're living in a Sci-Fi dystopia. We're have a lot less problems if we didn't.
Therapy is a very poor replacement for having a good social support system. But for some things, it's a resource your usual support system is unlikely to have.
We try to profesionalize big parts of heathy communities and families so we don't have to deal with its downsides.
So no, therapy is not part of the problem. Just because in your hypothetical scenario therapy has now been spread across multiple roles instead of a dedicated one, doesn't mean it ceases to exist - you are now expecting your family, friends, mentors, etc. to act as your therapist at will.
Unless you assume people are in therapy just because they get annoyed at how their lover eats breakfast, or whatever superficial aspect that could easily be solved with some chat. I don't know many people paying the cost of therapy for superficial problems like that but hey maybe in your community they do!
Some issues are caused by interpersonal conflict / abuse, but we're delicate social creatures and a lack of family & friends can also be extremely damaging. I doubt people are going to therapy because of how their lover eats breakfast (except maybe extreme misophonia), but there are plenty of people justifiably upset about their complete lack of emotionally intimate relationships with other people.
And, as mentioned above, many issues can be alleviated by support from friends and family. At least ideally, if your spouse hits you, you should be able to ask your family or community for support. People lacking those outside relationships only exacerbates mental health issues caused in other relationships.
> At least ideally, if your spouse hits you, you should be able to ask your family or community for support.
First, family and community usually do not know what to do in case of abuse. They are clueless.
Second, this is not how this issue was dealt with in the past. If you are in violent relationships, your chances are now massively better then in the past. In the past, you had no real support and you was pressured to give aggressor yet another chance again and again. You was told to be more obeissant and you was blamed for the way abuse harmed you. There are even less marital murders now, that is how much better it is. Violence against wife was frequently normalized and male victims were seen as not men enough.
What community all too often did was to support the abuser ... because abuser is stronger and more likely to retaliate. Plus victims were economically dependent (effectively by law) and supporting them would mean you need to financially help them too. Better for everyone to force victim back to abuser.
It's not that community is completely nonexistent in the modern world, or that we should give up the benefits of modern life to try to recapture it. Just that the average person in the recent past was more likely to have useful & meaningful connections with others that they could depend on in hardship than does (for example) the prototypical modern professional in an atomized big city.
> However, after a negative event in a relationship (abuse, or your spouse dying, or your child getting sick), people in general were more likely to have more friends and a stronger communal relationship that resulted in mutual aid (emotional and/or material). This isn't gone today, just greatly diminished
I would really need to see citatio for that. Because by all I know about past attitudes, pretty much the opposite happened. A lot of abuse was normalized. You even see that in memoirs - pre was memoirs frequently mentioned violent partners and the only respite was his death. The attitudes now are much different.
Even today, in remote Amish or Mormon communities, victim gets blamed, told to be submissive a and that is that. I mean, I literally heard sermon from conservative priest about how men should hit table with fist and if he hits woman she should cook better soup to chill him out.
There is no love, care, responsibility, advice, touch, inspiration, devotion in therapy.
I understand why and it's useful at times. But we are severely limiting our ability to help people if we do not use those aspect of the human psyche. Dangerous and tricky as they are, we've now simply blocked any possible idea of using those for mental problems treatments.
That's what I meant in the first place, there are lots of issues with communities and social relationships. To not have to deal with those we prefer a more individualistic lifestyle. Understandably, but not everyone has been able to get those human experiences naturally and it's definitely a part of the problem.
It is the sad state of insurance and mental health coverage in the US that is driving users to these apps that have no/little proven benefit. Then the high cost of education has made it practically impossible to provide low/no cost mental health services.
My wife's internship was at a place where she had 8+ sessions per day, they had a dozen or so unpaid interns still in school (usually second year of masters program) providing mental health services for low-income medicaid patients. And that leads to very quick burn out, and doesn't compensate fairly (or at all, actually) while accruing massive amounts of student debt.
There are federal programs that if you make it 10 years in community mental health paying your student loans at a lower rate, your loans are discharged, but it takes a very special person to survive 40+ hours per week of sessions, taking in and holding other people's mental health, and then add another 10+ hours of notes/insurance/treatment plans.
They are on SSI and Medic[are|aid] (not sure which).
The nice thing about their insurance, is that it covers 100% of their mental health care needs.
I am not aware of any private insurance that even comes close. The most I've seen, is a limited run of social worker appointments. No inpatient, heavy co-pays, etc.
Mental health is not a priority, in the US. We spend a lot more effort and money, ensuring that mentally ill people have access to weapons, than to care.
The mnemonic I heard from Planet Money was "grey hair? Medicare. Underpaid? Medicaid." Although Medicare will also apply to people under 65 with some conditions.
2. There is no country as far as I'm aware that can meet the demand for mental health services, from the most socialized to the most open market. None. Therapists are always full, most people don't want to be therapists, and the demand for them is super high.
I have no idea how to solve this. A lot of therapists also tend to stop being therapists pretty early in their career or radically reduce how many patients they see. Basically it just sucks to be a therapist no matter how much we pay and we can't make it better.
It's the mentality that making as much money as possible is the sole reason we exist. Paying interns nothing because "they're in school, learning" is no different than saying you don't want to pay college athletes because "they're supposed to be in school". Nah, you just want free work from people who you've led to believe that the way to grow in their life is to give you that free work.
Pay your workers, whether they're students or not. Stop working for free.
By some sort of fortunate occurrence, I started talking to them about 3 weeks before the COVID lockdowns. I don't know how I would have survived if not for him.
Sadly, due to how Kaiser treats their mental health staff, they decided to move on (and leave practicing therapy). Since he was moving on, Kaiser booted me out of their services since I wasn't a case that necessitated emergency treatment (they are right, but I still needed to _talk to someone_).
It's led me down a rabbit hole of trying to find various therapists. Most in this area are at capacity (naturally, everyone needs a therapist right now) or won't accept the third party service Kaiser partners through.
I ended up doing Betterhelp for a bit and that was such a mixed experience. Therapists that are overbooked and just grinding (one told me they have 70 clients a week! Uh, what?!) and the support was just so sub-par.
Specifically due to privacy concerns (and I think it's only a matter of time before these services have some sort of data breach), I registered with a throw away email, truncated my name, and generally just tried to provide very little identifying info.
(I guess they have my credit card details. Oh, well)
There’s a rash of “non-health” mental health apps and that’s just scary.
But even under hipaa providers, I expect they are deidentifying under safe harbor and reselling as much as possible. Imagine the training possibilities on all transcripts “scrubbed of pii.”
There are way too many fast and loose players in the mental health space, they do not care to actually have security. They do not have separate roles for security and engineering.
These startups only have to pretend to have security to appease their VCs. In Series B they MAY get a small security audit, but they already lie on their SOC2 or ISO27000... so whats some more lies?
The idea of having a rigorous process that ensures security is completely unacceptable if it adds any time to market.
This is why we see numerous hacks in the health tech space.
You've hit the nail on the head. A key excerpt from Jane.app's privacy policy highlights the potential risks:
"Suppliers and Service Providers. In order to operate our business and provide the Services to our Subscribers and their users, we may need to share a limited amount of personal information, including Patient Data, with our third-party suppliers and service providers." [1]
Currently, I'm attempting to remove my clinical data from Jane.app's servers, but I don't have high hopes for success. Many if not most of these smaller psychology and therapy groups rely on these platforms to store patient data. It is infuriating to me that the moment we disclose the most intimate details of our lives, they become permanent record.
"Removing Data from Jane. Practitioners offering health and medical services are under legal obligation to retain health or medical information that was collected during the course of treatment. It is their responsibility, in collaboration with the Jane Subscriber (clinic owner), to maintain these records, and in many cases, they are simply not allowed, under law, to delete certain records that they created, and they must retain records for a number of years, sometimes 10 years or more." [2]
Your secrets are not safe.
[1] https://jane.app/legal/privacy-policy [2] https://jane.app/guide/privacy-and-security/protecting-patie...
Disclaimer: I used to work here.
WHO's guide for "unhooking from difficult thoughts and feelings" which is not an app, is free, and has downloadable audio exercise guidance.
https://www.who.int/publications/i/item/9789240003927
It's one of the best things of its type I've seen.
I always wonder how things like this interact with sponsorship - I hear a lot of podcasts that have Betterhelp ads in them. I wonder whether, if they knew about such issues, that would affect their decision to take the sponsorship and promote them. Even if not in a binary "that's a non-starter" way, does it make people less inclined to take them on, and more open to other sponsors? Or do people not pay attention to their sponsors at all?
TWIT network does appear to try to vet their ads, even criticizing former sponsors for lax security once things come to light. Yet even they still promote Molecule and other pseudo-sci junk.
On the whole I think the best are listener supported shows. But I'm biased as I now work for a company that helps podcasters sell ad-free and premium access.
As someone with a chronic medical condition, my experience is that software approved by the FDA are often prohibitively expensive (they are considered medical devices) and not covered by insurance.
Note that not all software only applications in the medical domain are immediately considered medical devices, the line is a pretty fine one. If you plan on putting out an app that has medical implications you should research this properly to avoid running afoul of the regulators (which isn't a very good way to start your relationship).
Insurance companies are loathe to cover even FDA approved _physical_ devices. Insurance is enthusiastic to classify such things -- even treatments that are decades old -- as experimental. The only devices that are a shoe-in are things with widespread adoption like CPAP or pacemakers. If your condition is uncommon, you'll be paying out of pocket.
That wipes FDA approved apps off the map for most of us. Meanwhile, the app store is full of apps the claim to provide relief for various conditions for just $14.99/mo. Some of them are even actually effective.
I'm definitely not arguing that this state of affairs is a good thing, but it is pragmatic reality for those of us with chronic conditions. Unless we have truly fantastic insurance or loads of income (things that are often mutually exclusive with chronic conditions), we are priced out of the tools that are most trustworthy.
You are still giving them pretty private information. If they actually provide a benefit, that might be worth it. But I am not convinced they are actually helpful.
My guess is that exercise, especially outdoor exercise or getting together with friends has far more mental health benefit than these apps and also much less privacy downsides.
Neither meeting friends or using an app are binary events. The more you spend time on one, the less you spend time doing anything else — in the limit including the other. There's considerable evidence to suggest app and/or media usage encroaching on in-person time. It seems plausible that people who can band-aid their feelings in an app may be less inclined to take the leap and talk about personal matters with friends.
But these are complex things - there would need to be a study to know for sure.
People are not actively making a choice, they are passively making the choice to sit on their phones.
Perhaps something that uses CBT, gratitude, and postive reinforcement to help people build good exercise and diet habits?
Is there a way for a company to implement sufficient privacy protocols that would appease the most privacy-concious users?
The trivial way is to just not send data back to the internet. Nothing you listed here is impossible to do client side.
hopefully you were thinking of cognitive behavioral therapy because you would be correct:
> Whenever one hears the claim that CBT is the more 'effective' treatment, we can confidently translate this to refer to its role as the most cost-effective form of psychological social control[1]
1: https://melbournelacanian.wordpress.com/2014/02/04/the-found...