Are mental health apps better or worse at privacy in 2023?

https://foundation.mozilla.org/en/privacynotincluded/articles/are-mental-health-apps-better-or-worse-at-privacy-in-2023/

by light94 • 3 years ago

142 82 3 years ago

foundation.mozilla.org

SamoyedFurFluff• 3 years ago

I continue to be frustrated that politicians and lawmakers are more focused on culture war stuff than they are focused on updating sensible laws to the modern technologies of the time. I hear more about random ousting of people and whatever said something stupid on social media than I do about serious pushes to protect vulnerable populations online…

paulryanrogers2• 3 years ago

Talking about mental health is high risk, low reward for politicians. Culture and class divisions are the opposite.

davidthewatson• 3 years ago

Having built remote healthcare five years prior to Covid under HIPAA where you have an interdisciplinary team on the coach side and a chronically ill and vulnerable patient on the iPad side, who frequently have little to no mental model of what these "tin screens and string tubes" are doing to help them, the notion that "sensible laws" exist to govern any of this is beyond me. The chasm of disconnects between legal, politics, and tech has only gotten broader and deeper over the last 30 years while we realize that there was a reason that innovators were talking about the need for interdisciplinary work in the 50s before we deprecated the humanities. "Things that don't scale" is a mild understatement from costs to benefits. It makes, "another day at the office" look like the Khumbu Ice-fall.

RcouF1uZ4gsC• 3 years ago

I think a better question is if mental health apps actually help mental health.

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.

viraptor• 3 years ago

Which mental health apps? There's a massive difference between Calm, Better Stop Suicide and PTSD-related apps. Also it's not like people are making a choice between whether they meet friends or install Calm.

williamtrask• 3 years ago

Also it's not like people are making a choice between whether they meet friends or install Calm.

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.

throwaway22032• 3 years ago

Yes, that is exactly the point.

People are not actively making a choice, they are passively making the choice to sit on their phones.

meerita• 3 years ago

I was about to ask if anyone used one and noticed improvements. To me these mental apps sound like a scam.

vorpalhex2• 3 years ago

Studies suggest they work very well for some users. https://pubmed.ncbi.nlm.nih.gov/32480319/

algoatecorn• 3 years ago

How would you feel about a lifestyle guidance app?

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?

blep_• 3 years ago

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.

prepend• 3 years ago

I would only use a mental health app where the provider is hipaa bound.

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.”

bearjaws• 3 years ago

Nothing is safe sadly, HIPAA does almost nothing, in reality very few companies actually get the full fat $1000 per patient fine. Even the regulation itself is now hilariously outdated, "encrypted at rest and transit" is absolutely the lowest bar for security.

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.

6_6_6• 3 years ago

hipaa is a joke

wing-_-nuts• 3 years ago

I wonder when things will progress to the point where you could run a LLM that would do a good enough impression of a therapist on a 4090. I honestly think the only way I could trust something like this is if it was running on my own hardware, or a private cloud instance.

BandOfBots• 3 years ago

"I expect they are deidentifying under safe harbor and reselling as much as possible."

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...

bowel• 3 years ago

There's also 29k.org, a non-profit foundation and an open-source mental health app, where privacy were taken very seriously. https://29k.org/ https://github.com/29ki/29k

Disclaimer: I used to work here.

carvink• 3 years ago

Also,

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.

slackfan• 3 years ago

Are any of the mental health apps not just glorified pillmills?

harvey9• 3 years ago

There are lots of apps which do not connect you to a doctor and therefore do not connect you to pills either. Is that what you meant? The apps I have in mind are based mostly on CBT and/or mindfulness.

Regnore2• 3 years ago

What is CBT in this context because the CBT that comes to my mind - while fantastic if that's what you're into - would not typically be useful as a mental health treatment

jacquesm3• 3 years ago

Beware of health care apps that masquerade as something else just to sidestep regulation. If it provides health care services or aims to perform some kind of medical function then by definition it is a health care service and it ought to be regulated as such. If it isn't that's usually for a good reason, for instance because the purveyors of the service do not expect that they will be able to pass compliance review.

jnovek2• 3 years ago

Compliance review? Like HIPAA? Or are you referring to FDA approval?

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.

jacquesm3• 3 years ago

The key indeed is that they can be considered medical devices, and medical devices are a regulated class of devices (depending on where you live these can have all kinds of compliance requirements imposed on them). Compliance is expensive, difficult and tends to constrain what you can do with your data. So companies that want to side-step compliance will work hard to avoid being labeled a medical device. Whether your insurance covers the costs or not is yet another aspect, typically if your insurance company isn't going to reimburse you for an app that is classed as a medical device they definitely aren't going to reimburse you for other kinds of apps that are not approved.

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).

photochemsyn2• 3 years ago

Very true. Most people wouldn't use an app they downloaded to their device to help them manage health conditions related to cancer, heart disease, or infectious disease. They'd almost certainly want private confidential consultations with a real doctor (although quite a few doctors have served as little more than salespeople for the pharmaceutical opiate manufactures).

photochemsyn2• 3 years ago

A good example of social dystopia would be a situation in a country where economic stress is driving depression and anxiety and suicidal ideation and the solution proferred is to install an app on your phone that sends you 'positive messages' and directs you to spend what little money you have on drugs that make you feel better. A good analysis of this situation is here:

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.

mtlmtlmtlmtl3• 3 years ago

Honestly if I was having one of my bad depressive episodes, and someone told me to download a fucking app that's supposed to help me by pandering to me, or I'm supposed to do therapy with a fucking experimental language model. It might depress me so much I'd finally have the motivation to end it.

Because yeah, that's dystopian as hell, not to mention dehumanising.

adamwong246• 3 years ago

The idea we can treat mental health through yet an another skinner box is a horrifying unfunny joke. Mental health problems are literally caused by screen addiction and social atomization. The solution is to put the phone down!

vjk8002• 3 years ago

To be fair, regular therapy is also slightly dehumanising and dystopian. Not too long ago we had cultural constructions to prevent the issues we are now solving with therapy. Do you lack social context, close relationships and meaningful interactions with other people? Wait until you go nuts and then pay 100 euros a session to a stranger to help you deal with it.

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.

jiggywiggy2• 3 years ago

Therapy is part of the problem. Often things that people think should be solved by talking to therapist should actually be solved by family, friends and mentors.

We try to profesionalize big parts of heathy communities and families so we don't have to deal with its downsides.

waboremo2• 3 years ago

You realize a lot of the reason why people are in therapy is because of family, friends, and mentors? Like it's not a lack of initiative, or a lack of communicating; it's being shamed by your own family, being manipulated by friends, etc. So many of these problems stem because humans are fucking complicated (and sometimes cruel) as hell.

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!

antifa• 3 years ago

I don't think anyone is paying for therapy if they have family, friends, mentors available...

thenerdhead• 3 years ago

This goes back even further. Humans have always desired a new medication or technical invention to resolve the woe in their souls.

7952• 3 years ago

This will start to happen in business. The company I work for has high levels of stress. We now have lots of HR people sending messages about mental health. Endless messages about mindfulness, yoga, a monthly happy thoughts diary etc. At no point does anyone acknowledge that maybe working conditions are part of the problem. Or that the business has any culpability for stress. It is just another growth vector for charlatans. A corporate branded wellbeing app is the next logical step.

jermaustin1• 3 years ago

My wife is a psychotherapist, and I go to therapy, and so does she (on top of paid supervision and support).

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.

ChrisMarshallNY• 3 years ago

I have family that is quite severly mentally ill.

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.

gs17• 3 years ago

They are on SSI and Medic[are|aid] (not sure which).

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.

funnym0nk3y• 3 years ago

So it's the state of mental health coverage in Germany too. It's bad. Although therapy is paid for by the mandatory health insurance, there are multiple issues: Wait times of months up to three quarters of a year for a place in hospital, similar wait periods for outpatient care. A lot of therapists won't put you on a waitlist anymore. Federal insurance won't issue more permits for therapist so it's a constant fight for already exhausted patients to find someone (not counting in of they get along). On top, there is more and more pressure to keep mental health costs down by limiting time for inpatient care, by limiting (or severely hinder any extension) the amount of hours and so on.

vorpalhex2• 3 years ago

1. Apps seem to be a useful tool. They help a lot of people who either won't use or are not helped by traditional therapy. Think of them like workbooks - they're an alternative that may be better for some.

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.

LocalH• 3 years ago

If you look around in the world, you see all these little pockets of bullshit, where those in power and control see the system as a way to screw over and steal from the individual who's just trying to live their life.

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.

davely• 3 years ago

After struggling for years, I finally found someone through Kaiser (my insurance company for those outside of west coast USA), and they were absolutely phenomenal.

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)

cassiebender• 3 years ago

In 2023, mental health apps have significantly improved their privacy practices.Front end development has played a key role in creating user-friendly interfaces, implementing stronger authentication and encryption protocols, and allowing users to customize their privacy preferences. These efforts have resulted in apps that are better at protecting user privacy, building trust with their users, and providing valuable mental health support.

nexthash• 3 years ago

Is this a joke? How could you possibly believe in this delusion, when these apps have been shown over and over again to be gaslighting vulnerable people into divulging sensitive information about themselves to a VC-backed ad pipeline. Have you seen BetterHelp's ads on YouTube? Pure manipulation of people who are suffering.

sundarurfriend2• 3 years ago

Betterhelp has a $7.8 million dollar judgment issue against them by the US regulatory agency the FTC for promising not to share sensitive mental health information for advertising and then turning around and doing just that.

nluken• 3 years ago

Million, with an M? Might as well be a jaywalking ticket.

sundarurfriend2• 3 years ago

Betterhelp has a $7.8 million dollar judgment issue against them by the US regulatory agency the FTC for promising not to share sensitive mental health information for advertising and then turning around and doing just that.

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?

paulryanrogers2• 3 years ago

Podcasts I listen to often feel pretty disconnected from the ads. Some do auto injection and may not know all (or any) of the ads that any given user hears. And folks cannot be experts in everything.

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.

picometer• 3 years ago

The Skeptics’ Guide to the Universe podcast dropped BetterHelp as an ad sponsor immediately after hearing about this mess. So there are some out there who care. It certainly increases my (already high) trust in their podcast operations.

lykahb• 3 years ago

Here is some free mental health advice: put the phone away.

elesbao• 3 years ago

The one mental health app I need is Gympass - Hitting the gym has helping me cope with anxiety

Awelton• 3 years ago

I wasn't aware that mental health apps were a thing that existed, though I have seen quite a few that have the opposite effect. I always assumed I would be dead and gone before we got to the point where people cried into their electronics in exchange for positive affirmations and pills. I think I have finally done it. I have lived long enough to see the dystopia.

Are mental health apps better or worse at privacy in 2023?

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