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Comment by ChrisMarshallNY | Hacker News Reader

This is a classic "Damoclean sword" conundrum.

The ability to digitize and aggregate the data, and maybe even subject it to some kinds of AI, might result in massive improvement in therapy.

Mental health treatment has come an incredibly long way, just in the last couple of decades. It's even more amazing, when you look at how it went a hundred years ago. Some of the reasons are because of the ability to study treatment methodologies and outcomes.

But having the data in a place that can happen, is very, very risky.

People with mental health problems tend to be treated as "disposable people" by a lot of folks. I guarantee that the first thing the hackers did, was find a way to "dehumanize" the people in their data. Having the people as "data" went a long way towards that.

But people will die as a direct result of this breach. That's not hyperbole. It will happen. Some people will commit suicide, some will avoid treatment, causing all kinds of collateral damage, and some may actually kill other people, because of this.

I have a lot of close, personal experience with people suffering from mental health issues, and this is about as bad a nightmare as you can imagine.

It will reverberate around the world.

View on HN

If anyone out there ever reaches that dark place of wanting to commit suicide, please remember that you can speak to someone, for free, 24/7 on these numbers for USA and UK.

* US national suicide hotline: 1-800-273-TALK (8255)

* UK Samaritans hotline: 116 123

You can go to one of these sites for phone numbers in other countries:

* https://www.suicidestop.com/call_a_hotline.html

* https://wikipedia.org/wiki/List_of_suicide_crisis_lines

Whatever happens, whatever you've done, I think your life is worth saving. Even if you don't.

Edit: updated with lists for rest of world.

This is a pretty enduring meme (in the Dawkins sense). I wonder if it has any effect at all.

Even once person saved is an effect.

It’s my experience that such lines are impersonal, with staffers that fail to understand and humanize the caller.

I'm sorry you had a bad experience. My first Samaritans call wasn't exactly a breeze either (a lot of uhuh, sure, yeah).

I will say -- these phone lines are staffed by human beings. Even with the best of intentions, they're just that, humans. They wont always get it right.

But, when they do, it can be life changing.

I'm always grateful for the kind Samaritans lady who stayed on the phone for over an hour one night.

You don't need to wonder. Millions [0] of people call it each year, and that doesn't happen without it being disseminated. Dissemination works.

As further evidence (albeit anecdotal) I have noticed, especially in light of prominent suicides in the last few years, that the information posted seems to be getting more attention, with, as you called it, meme-like inclusion almost everywhere and every time suicide is discussed. This has correlated with an increase in the number of calls they receive.

They have received more than 12,000,000 calls since 2005, with 8,500,000 just between 2014-2018, much faster than the increases in suicide rates.

[0] https://suicidepreventionlifeline.org/wp-content/uploads/201...

However, people who call are not necessarily people who would commit. There is little correlation between phone calls and actual progress, if not the usual « giving an impression of progress, while the problem entrenches itself. » Those may be two groups with surprisingly little overlap. I’ve called 6 numbers when I thought about it, none of them answered (turns out in France they’re all closed after 9pm, badly staffed, or reserved for teens or women), yet I didn’t commit suicide (I did commit criminal activity though, as a revenge for society not returning my call to this day, and generally society being vengeful towards men because supposed ancestors were supposedly mean to women).

People who commit have real problems that a phone call generally doesn’t solve, unless your problem is just about feelings, which is... let’s say it helps those who call for attention a lot, and who would end up with a failed attempt to call for attention, which will attract attention, but it will hide the real x5 numbers behind the scenes of the other gender who actually commits suicide when they try.

It’s time to stop with the « let’s speak about it » attitude, and start with the « let’s give you funds/education/solve your parental problems/throw the book at your boss/mandate your wife to let you see your kids/stop sidestepping you at work/fix the VA together » attitude.

Men are not an option.

You are very much mis-chracterizing the type of person who considers, attempts, or commits suicide. Many people seeking help are grasping at the last slight hope that something, anything, might make things better. Characterizing that population as "attention seeking" or "just about feeling" is an extreme insult to those honestly seeking help.

I have a certain degree of personal knowledge on this topic, and there are absolutely people who would be dead right know if they made that call... And no one picked up on the other end.

I like how you are trying to frame issue as sexism against males while also throwing around stereotypes that prevent males to seek help for their mental health problems.

Also, I don't understand why is so much anger around people who are so starving and desperate for attention. You was quite apparently looking for attention too. That you turned frustration at others does not make it less so.

During a US trip (before the extent of today's always-on mobile internet), I was unaware that 911 was the wrong number to call when you're close to suicide.

They won't call the suicide hotline for you. They won't transfer you. They won't share their number. What they'll do is send the police.

I can safely say, in retrospect, that although I survived it, it took nearly a decade to fully heal from that event. But in the mean time, I also learned (thanks to posts like these) about the Samaritans and later in the UK, they helped me get through the tougher moments of this process.

I don't know how significant the effect is, but it's non-zero. :)

Sounds horrible. Glad to hear that you found the help you needed.

A growing number of places are realizing that sending a militarized police force for mental health crises is not a good idea and turning to actual qualified people instead.

Perhaps this is a nitpick, but in the interest of raising awareness and diminishing harm I would like to add that not everyone who attempts suicide is in a dark place.

I have a close, immediate family member who has attempted suicide on numerous occasions. Sometimes she was in a dark place of depression and despair, for sure, but other times she was high on life and full of energy. Those times it would be a sudden urge that came over her, and not an outcome of despair.

Wouldn't one classify such sudden urges as sudden dark places then?

You could, but it's not a very helpful way to think about things.

If you think, "I want to commit suicide, therefore I must be in a dark place," it's putting the cart before the horse, for sure. Most people are under the illusion that suicidal thoughts stem from feelings of depression / sadness, and the reality is that these are three entirely different things: suicidal thoughts, depression, and sadness are three things which are often very different from each other.

So you think someone must be sad because they have depression, or they must not be depressed because they aren't sad, and these incorrect beliefs can lead to harm.

And you also think that someone who is not acting sad or depressed must not be thinking about suicide, when very often someone who has decided to commit suicide may feel very happy or liberated having made that choice.

It can be really enlightening to talk to different people who have experienced or who experience suicidal ideation, because their experiences are varied, and while suicidal ideation is considered a risk factor, it doesn't mean that you're more likely to commit suicide and the people with suicidal ideation are often reluctant to talk about it because of the stigma. Like, "I experience suicidal thoughts, and I want to talk about them, but if I talk about them, people will wrongly think I want to commit suicide, or wrongly think that I am depressed, or wrongly think I am sad, so I am unlikely to get the sympathy or help I need and it is likely that talking about it will have a negative impact on my relationships."

As a former suicide-considering person (never attempted), I sincerely believe it's worth separating the action from the desire.

We get all sorts of desires. The mind is full of inactive, dormant code. But, when we get one of them, then entertain it long enough, and the environment is just right, people most certainly will do horrible things, including killing themselves and others.

I'm not implying that it's all programmable, but more that decisions are the consequence of many variables after the initial temptation.

On this subject, how do I know that the fact that I used these services (and other mental health services) won't ever be used against me? From data abuse, to hacks (as in this article), to the questionable act of involuntary confinement, there's a lot of reasons people are scared of using these services.

From: https://www.samaritans.org/how-we-can-help/contact-samaritan...

Is this service confidential?

Yes, except for in certain situations where our safeguarding policy means we may tell someone, for example, by calling an ambulance. Read more about when we do this.

On the phone

When you call Samaritans, your number is not displayed to our volunteer. The phones we use don’t have caller display information on them.

We might ask your name, because it’s a natural question to ask in a conversation, or because of something you have said to us, but you don’t have to tell us if you prefer not to.

Via email

If you've emailed us, your email address will not be shown to the volunteer.

In person

You don’t have to tell us your name if you don’t want to. In the unlikely event that you see the Samaritan volunteer that you spoke to later on the street, the Samaritans volunteer will not acknowledge you, unless you do so first. This is to respect your privacy and the confidentiality of your visit, unless you wish to recognise it.

By Letter

We will need your name and address to reply, but to maintain confidentiality, your letter will be shredded once we have sent you our response.

The problem with these lines is that you need to out yourself having mental problems. After this breach I'd be very reluctant to do this. Eg. in Germany, pseudonymous health data is centrally stored for research purposes, open to a non-specified number of research institutions.

"Mental health treatment has come an incredibly long way, just in the last couple of decades."

Personally I am not convinced about that. Or do you mean that from an academic perspective?

Because in the real world, the therapy method I have mostly seen, was and is keeping people calm with pills.

Um...I have close, personal, and intimate relationships with many people that suffer from mental illness, and have had this for decades.

I do a lot of "extracurricular" work, trying to help folks get back on their feet.

So, not academic. Personal.

> Because in the real world, the therapy method I have mostly seen, was and is keeping people calm with pills.

I consider that offensive. It's a fairly classic "strawman" argument that is used to "dehumanize" people that suffer from mental illness, and also dehumanize people trying to help them. I know many people that would be in very dire straits, if not for medication, therapy, and many years of hard work.

I'm pretty upset by this, and by the reactions.

I am not a therapist. Just someone with "skin in the game."

These aren't "data points." These are people, and chances are good that we all have folks in our orbit that have mental health issues.

To be fair, you made a claim that "mental health treatment has come an incredibly long way". And the only evidence you have offered to back that up is a vague personal anecdote.

The poster was simply providing their viewpoint on the state of mental health that differs from yours.

I understand these things can cause strong emotions, but you don't do yourself or your stance any favors by letting it get the best of you here.

To be fair, even though I am not, myself, a therapist, I have been dealing with them for decades.

It's not "vague, personal anecdotes." It's real world experience.

But you are right. This is upsetting, and seeing the way that it is being treated by people that I respect, otherwise, is upsetting.

This is the last I'll say anything.

Vague personal anecdotes doesn't mean they are not from the real world.

You're taking someone else's valid criticism of the state of the therapy methods available today and taking it personally as well as unwarrantedly attributing it to a lack of sympathy.

You fail to understand that the goal of criticizing the therapy method is precisely so we may find ways to improve it.

What makes this single point of view a valid criticism?

What makes it not valid? It would actually be great to have an answer to that instead of the parent's complaints

Because, getting back to the original point, stating "Mental health treatment has come an incredibly long way, just in the last couple of decades" without offering any substantive support for this viewpoint (regardless of whether one's anecdotes are "real world" or not) is, in and of itself, a valid criticism. The onus is on the person making the claim to provide a rationale to back it up.

Vague personal anecdote's versus hutzlibu's vague personal anecdotes.

Quite frankly, the pills work. A lot of people would unable to lead normal lives without them.

> Quite frankly, the pills work.

Sometimes they do and sometimes they don't. I had a seizure because of medication I was put on for a mental illness I didn't believe I had. I wasn't 18 and my parents essentially forced me to take them. The pills didn't do anything for me besides give me a seizure that easily could've killed me (I was hospitalized).

There's also actual research suggesting these pills can increase suicide attempts.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3353604/

There is enormous money to be made suggesting these pills are useful, so I don't just assume it to be true. I also know many other people who feel anti-depressants ruined their lives. I also know many people who feel anti-depressants saved their lives.

It's not black and white. Personally, I feel the efficacy of pills for mental health are greatly exaggerated - but it's easy to see why I might be biased.

Also the placebo effect is right on their heels in terms of effectiveness

Can the placebo exist without the "real" pills? More practically, does anyone prescribe placebo outside of a clinical trial?

Homeopathic treatment is largely placebo.

A board certified doc will never prescribe placebo he will get sued, plenty of ppl are getting them via alternative medicine though

Yes. It is the same real, measurable response you would get from an effective medication even though no medication was given. In many cases the rate at which placebo occurs is surprisingly high. (https://www.medicalnewstoday.com/articles/306437)

I know what placebos are. But the effect is created by telling the patient you gave them medication. So I don't believe it's possible to make "treatment by placebo" a standard.

> a mental illness I didn't believe I had

I don't know your personal journey, but I think it would be fairly easy to find people with very deep, very real mental health problems who fully believe they do not have a problem.

> The pills didn't do anything for me

Again, I don't know your personal journey, but as a counter anecdote when I started taking medication I couldn't tell if they were having any effect at all, but apparently it had such an effect that some of the people around me could tell me the day I started taking it, along with measurable improvements.

Not to invalidate your experiences, just adding to the anecdotal pool

They do work. They also harm many people also.

And I have close, personal, and intimate relationships with mental illness and its medication myself and if you do know so much as you claim you would know that many (as in likely most) physicians today think the future will see our current medications on par with lobotomies. Anti-psychotic medicine especially is seen as chemical lobotomies. On top of that when 1/3 of the US population is on antidepressants these medications clearly doesn't work either.

https://www.psychologytoday.com/us/blog/out-the-darkness/201...

You might have "skin in the game" but then it is depressing you do not know that almost all mentally ill people would in the long run be healthier without these pills. They mostly only work short-term and absolutely destroy ones health long term. You should be advocating for people to get short-term medically help and long term medicine-free therapeutic help if you really care.

This is a terrible sentiment. You aren't a mental health expert. I have seen more than a couple of people come back from the edge because of medications. We use pills for other issues like heart disease, diabetes, etc and people live a relatively normal life. The brain is just an organ. Sure some people would be better off without medication, but lots more would be dead or locked up in a mental institution. Lots of people have chemical imbalances and no matter how much "lie back and tell me your problems" they get they will never be well. Are medications over-prescribed I'm sure that's true in some cases as well.

I would be much more willing to believe the chemical imbalance concept if someone could actually explain which chemicals, and what the correct balance is.

Serotonin you may say? Okay, how much is the correct amount of serotonin then? Can you just give me a test to see if I have the right amount?

What’s going on here is not quantifiable science. It’s throw something at the wall and see what sticks.

I think the best the pill can do right now is to at least making some disturbance to change the balance and hoping it produce desirable outcome.

Yes basically throw something at the wall and hoping it stick.

You might be surprised at the number of medications which are effective for specific conditions or symptoms but for which we don't know the mechanism that achieves the effect.

Yes, modern medicine has a large component of throwing stuff at the wall to see if it sticks.

If it sticks, and it passes all the usual clinical trials to prove it does more good than harm, it's approved, even if we don't understand exactly why it works.

Try looking deeply into almost any specific condition - let's take heart disease. Cholesterol, for instance - is it bad? Is it necessary? Do you need a certain amount or does the amount not matter so long as you have the correct ratio of fats? Why are some people perfectly healthy with cholesterol numbers off the roof, and others can have atherosclerosis with cholesterol numbers off the charts low? Will reducing cholesterol for that second person help them? Hurt them?

For the record, the treatment plan my cardiologist put me on was explained as "all these things seem correlated with not having heart attacks so we'll just do them all and hope it helps you".

Is the chemical imbalance theory accepted by all the experts? I remember seeing an article that questioned it. It also pointed to a study which showed that a lot of the antidepressant effect can be attributed to just placebo. I personally don't know much about the subject though so I don't know what sources to trust.

It's not, but it's something that has been lobbied and astroturfed into being offensive to disagree with, and is about 2 years from being censored on twitter and facebook (if it isn't already.) There are millions of people who, in the middle of severe episodes, were given particular drugs. They eventually recovered from these episodes (or they didn't, but we don't hear from those people.) They've been told that they they will quickly end up back in the middle of the despair they were in if they cease taking them (lots do while continuing to take them, but we don't hear from those people.) Now you're questioning (and implicitly threatening) their lifeline.

These people are fighting for their lives, and are taken advantage of by an industry. It also doesn't help that plenty of antipsychotics are crucial for people to take, but that's because those are drugs that actually make it difficult to think for people whose thoughts get out of control. They don't claim to be eradicating the chemicals or deficiencies of chemicals that cause all psychosis.

The tactic of pharmaceutical companies creating patients' groups to get sufferers together and lobby "on their behalf" has been going on since the 80s. It's bulletproof, and impossible to attack. In the case of antidepressants, they've also guided them into defending these drugs as a class, rather than on an individual basis.

Funded patients' groups also played a huge part in the prescription opiate epidemic; it doesn't matter how much science says that long-term opiates aren't helping chronic pain, you have to be heartless to dismiss someone with a known painful condition or injury when they're pleading for opiates. Even though you know that people who had nothing wrong with them before going on opiates would plead just as intensely.

I am in agreement with a fair amount of what you said about overprescription, the lack of scientific backing for the chemical imbalance theory, and the less than stellar effectiveness of antipsychotics. But the way you're presenting it makes it sound like a conspiracy theory and truthfully comes off somewhat illogical and paranoid. That takes a lot away from your argument. Maybe there is a conspiracy, but if there is, then you need to back it up with proof or sources.

On another note, there is one thing you are absolutely incorrect about: antipsychotics are not ineffective managing many mental health disorders. Large clinical trials are done before these drugs are even approved for the sole purpose of proving they are better than no treatment.

I have worked directly and indirectly in inpatient mental health settings intermittently. The parent poster's view is correct with regards to my experience.

Yes, for some people antipsychotics, antidepressants, etc. are a godsend and the difference between living a mostly normal and productive life vs. jumping off a bridge, dying in a homeless encampment because they cannot feed themselves, or committing violent acts against others. To clarify, none of these are hyperbole or exaggeration -- those are two extremes on outcome with mental health issues and antipsychotics can be the difference between the two.

That being said, many, if not most, physicians I have worked with agree with the parent comment. For many patients these medications are not effective and are used as chemical restraints [0] rather than with the goal of normalizing their mental health. Eventually the logic becomes "we'll never fix them, but we can sedate them so much they won't hurt themselves or others" so dosages progressively increase until the patient becomes more sedated and somewhat zombie like. This isn't hospital specific; I have seen it across 3-4 different hospitals in different states. Neuroscience and psychiatry is a very young field and the truth is that we do not know what causes mental health issues or how to deal with them. The chemical imbalance theory is just that, a theory, and more importantly, one with very little scientific proof and backing [1].

[0] https://www.medicinenet.com/what_is_an_example_of_chemical_r... [1] https://www.healthline.com/health/chemical-imbalance-in-the-...

"> Because in the real world, the therapy method I have mostly seen, was and is keeping people calm with pills.

I consider that offensive"

You might also consider, that other people might have a "skin in the game", with close, intimate relationship to mental illnes patients, too. Some of them tragic.

And my experience simply is not, that in general psychotherapy evolved a lot. I see rather a trend to favor pills to keep people calm as this is cheaper, than deep psychoanalytical therapy.

So consider that offensive, if you must, downvote, if that makes you feel better, but it does not change my personal experience.

I completely agree with you. I know many people who's lives are made much easier because they have access to medication. The last fifty years have also seen a massive improvement in the lives of people with severe mental health problems (in europe at least).

However, support for people with mental health problems is still severly underfunded. The improvements we have seen say as much about the terrible treatment of the past as they do about how well we are doing now.

Almost all studies I have read find that a combination of medication and other therapies provide for the best outcomes. Most people can only get funding for medication, which is often better than nothing, but it really falls short of what society could, relatively easily, provide.

It is really a tragedy, not just to the individuals suffering from mental health problems, but also to society as a whole which misses out from all the untapped productivity and creativity.

I agree. Most of the "progress" seems to be shiny press releases about wonder drugs. Then you look at the literature and discover 5% effectiveness for ideal uses and serious side effects. It's very important to "seek help" but that doesn't mean any actually exists.

In the last couple of decades we've dissociated autism from schizophrenia, declared homosexuality and being trans no longer a mental illness, and uncovered therapeutic techniques like cognitive behavioral therapy which has real, measured, repeat-study impact in lowering people's risk of suicide.

That's mostly incorrect. Only Gender Identity Disorder -> Gender Dysphoria happened in the last 2 decades.

CBT is great and I personally benefited from it, but it's not a recent phenomenon and its effectiveness is very hard to evaluate. There was a meta-study analysis in 2015 that pointed at a decline in its effectiveness between 1977 and 2014. I wonder whether it's because studying anything to do with a human brain is hard and we can't trust the numbers or if it's because of changes in society that caused people's personality to shift in a direction which makes CBT less effective.

Autism and schizophrenia were differentiated in 1980, so that's not in the last 2 decades.

Homosexuality stopped being a mental illness in 1973 (or 1987 if you include sexual orientation disturbance), so that's not in the last 2 decades. This was a great success, there were studies that pointed at a marked decrease in suicides among people in same-sex relationship over time.

Gender Identity Disorder stopped being a mental illness in 2013 but I think the issue has been politicised and the outcome doesn't necessarily make a lot of sense. I can bring a personal anecdote from a friend of mine who started using a female name for a period and wanted to perform a reaffirmation surgery, who later changed his mind.

- Most kids who experience gender dysphoria before puberty grow out of it.

- Suicide rates are high even after reaffirmation surgery and even in western societies, which are accepting of transgenders. Moreover, if discrimination was the cause of suicide rates, I think we would see a high suicide rate in minorities. There is way more discrimination towards people of color than towards transgender.

- If Gender Identity Disorder is not a mental illness, shouldn't we be consistent and label Body Integrity Dysphoria (aka people who believe they're amputee) as diversity and approve of cutting off of healthy limbs?

I'm skeptical on including this as a win for the field.

> There was a meta-study analysis in 2015 that pointed at a decline in its effectiveness between 1977 and 2014. I wonder whether it's because studying anything to do with a human brain is hard and we can't trust the numbers or if it's because of changes in society that caused people's personality to shift in a direction which makes CBT less effective.

Another theory is that methodology doesn’t matter and the result mostly depends on personal qualities of the psychiatrist. And CBT was effective because the best specialists adopted it. When the rest of the profession caught up effectiveness went down.

That's intriguing. Is there a name for a process like that? Because I can imagine that it happens a lot.

In psychotherapy it is called the Dodo bird verdict: https://en.wikipedia.org/wiki/Dodo_bird_verdict

1) I wasn't aware couple meant literally in the past 20 years and not the past handful (which to me would be anything within recent memory).

2) Transgender people do not have the legal protections that people of color do. There have only recently been laws to protect transgender people to be employed, have healthcare, etc. on the federal level- and what protections exist can be easily stripped away due to "moral disagreement" of the employer. You cannot refuse as an employer to give a black woman healthcare because you have a "moral disagreement" with her being black.

> Homosexuality stopped being a mental illness in 1973 (or 1987 if you include sexual orientation disturbance), so that's not in the last 2 decades. This was a great success, there were studies that pointed at a marked decrease in suicides among people in same-sex relationship over time.

And while it's progress for psychology itself, and good for society, it's certainly not an achievement. People were killing themselves and being institutionalized because psychologists were calling them insane, and this stopped happening when psychology chose to stop calling them insane. I can't claim an important discovery in abuse prevention if I choose to stop abusing someone.

> Homosexuality stopped being a mental illness in 1973 (or 1987 if you include sexual orientation disturbance)

Depends on your country. The WHO's ICD-9 document, published in 1977, still included homosexuality as a disease. It was removed in ICD-10, but it was only published in 1990. Countries adopted it in the 1990s and early 2000s. Germany belongs to the group which adopted it in the 2000s. So yes, it happened in the last 20 years.

There are still plenty of countries and significant chunk of the conservatative US which treats it like a illness, that's not the point.

The discussion about 2decades seems to about accepted academic outcome not policy execution, which is always varied.

FGM or homeopathy or chinese medicine is still a problem in many parts of the world. We don't think validaty of science or anatomy depends on your country.

Definitely, science shouldn't depend on the country, but the USA isn't the world either, and the person I was replying to equated the USA with the world. At least they should have used the year when ICD-10 came out.

Yes, you are right , there is fairly blurry line on when something becomes accepted .

ICD-10 could be one unambiguous way to classify.

Suicide rates and mental health conditions are skyrocketing. The effect of all this push about "mental health" has been to convince more and more people to believe they have mental health problems. And adopting this label does not seem to benefit their lives.

I believe you are correct, specifically about the label; allowing a mental health concern to be your identity, or even just part of it, can be more disabling than the problem itself. It also allows many people who would otherwise find ways to cope (healthily or not) to use the label as a crutch. "My depression made me..." or "My autism causes me to..." are not uncommon phrases to hear now.

It can be. On the flip side, I think there are people, who have been labeled negatively (eg lazy) because of a behavioral or medical condition, and now associate the traits that have been viewed negatively with that condition.

Stigma is a huge problem, especially when initially seeking help. Burnout took years to be added to diagnostic manuals, and still people are scoffing whenever someone drops out after being worked to the bone for months.

In Finland, burnout is not considered a valid reason for sick leave. Depression is, so people are only given sick leave if they accept that diagnosis and medication.

It's basically the same in the US. Taking care of your "Mental Health" is corporate speak for burnout. There is talk about avoiding burnout, but if someone has to actually take leave because of it, there are no legal protections for burnout, but there are for mental health issues. Mental health can be treated, but burnout is harder to come back from in the eyes of the company.

This is a fun way to avoid the actual thing we should talk about: We have systemic issues in our society that make people sick. Treating impacted mental health exclusively as a cause in and of itself - a personal issue - is a serious oversight, especially when we know those that have to fear for their survival living paycheck to paycheck are at much, much greater risk.

I'm sure you can think of different social developments that relate to this too if you're a hardline "you are responsible for your own situation" capitalist without much thought given to individual privilege. There's plenty of others. Let's take social media incentivizing only sharing positive things, leading to bias when comparing your situation to others, for instance.

The current system is a band aid on top of structural issues, nothing else. No amount of CBT and SSRIs can fix these.

this, a hundred times.

the labels are a form of victim-blaming.

Agreed, but both can be true to varying degrees at the same time.

Bipolar disorder, clinical depression / major depressive issues, etc.

Plus, since each "band aid" in this case is a human life - a person who may then be able to go on to help others and reform the system, I'm definitely a fan of pursuing both avenues at the same time.

Of course mood affecting disorders exist on their own, it is just that they are heavily exacerbated in those susceptible to them if they have to constantly stress about their existence. By band-aid I meant more that they are a detraction from the root cause. As I said before, our forms of treatment can not cure these conditions as long as the root cause is not tackled.

Mostly agreed. However with, bipolar disorder for example, I'm not sure that the problems with our society are the root cause ... though I suppose perhaps increased pollutants might cause more issues with children/birth.

But still, my point is I don't believe 100% of mental health issues have the dysfunctions in our society as their root cause.

Which isn't to say that some do and that it's not a big deal - it is.

> The effect of all this push about "mental health" has been to convince more and more people to believe they have mental health problems.

> Suicide rates ... are skyrocketing.

I'm confused. You seem to be suggesting that having more conversations about mental health is to blame for an increase of people committing suicide.

This is the exact opposite of my lived experience.

Conversations about my mental health and my problems are why I'm alive (and have no intention of taking my own life) today.

If you have a different lived experience, then fair enough.

But I'd respectfully suggest to take care painting with such a wide, sweeping brush next time. Life ain't binary. Especially when it comes to mental health.

"You seem to be suggesting that having more conversations about mental health is to blame for an increase of people committing suicide."

I do not see him suggesting that. He was suggesting that "labeling" more and more people as mentally ill might cause more bad, than good.

Allmost everybody has psychological problems. And yes, it is very important to be able to speak about it openly. But it is a different thing to have "mental problems", or to have a "medical mental condition".

Is there a push to label more people as mentally ill? From what I’ve seen, the push to destigmatize mental health is done to avoid labeling and treat mental health the way we treat general health. For example, treat stress and anxiety as health concerns whereby you can/should take time off if you need to recover from stress as you would a cold. Or, if having difficulty reducing your stress, to see a therapist without any social stigma.

Labeling people mentally ill is how the mental health industry convinces insurance companies to pay them for their services.

It's also probably not possible to convince the government to let doctors prescribe potentially mind altering drugs to people unless they say the people taking drugs are "ill" and the doctors are treating the "illness".

So yes I'd say there is a push to label people as ill.

What I think would be awesome is if mental health was de-stigmatized. Like physical health is.

I feel like back in the day - our grandparents, or their grandparents, perhaps you'd see men who didn't want to go to the doctor.

Now it is completely normal and expected to get a yearly physical. IMHO we all should be getting a yearly "mental", as well (with a psychologist, not a psychiatrist), and it should be both normal and expected.

Back in the day a doctor might make you less healthy, not more, especially in the era before they knew to sterilize surgical tools.

You obviously aren't concerned that the "professional brain jargon talking person" will make things worse. I know from experience they sometimes do.

I don't trust mental health professionals nearly as much as you do.

You may have your causation/correlation confused.

>Suicide rates... are skyrocketing

Not globally. A search suggests suicide rates are down 15% in 10 years. That is, suicides have gone down remarkably.

If we're talking about the UK/US (which I haven't sourced but I can believe), it's more likely that conservative policies are driving people to feel they have no alternative.

Key thing is in employment. The damage of the pills vs likelihood of an episode at work. (Work may not know if your mental health diagnosis). Once you hit retirement you can stop taking medication.

> Because in the real world, the therapy method I have mostly seen, was and is keeping people calm with pills.

I dunno, in most common diseases going around right now the solution is to treat people with pills. How is depression any different?

First, well "keeping people calm" with pills is not making people healthy again.

Secondly: a bacteria infection and the treatment with antibiotic is very well understood - and is actually solving the issue.

The brain is not at all understood. Lifting peoples mood with drugs is not solving, why they were constant unhappy in the first place.

I think the fact that we no longer use barbaric practices such as lobotomies certainly counts.

Still, we have only the faintest idea of how the mind truly works.

> This is a classic "Damoclean sword" conundrum.

Is it though?

Its only a conundrum because of the way we have organised data, with NO regard for the people the data comes from. We could have had data collected WITH consent only.

The privacy boat left the port long ago - personal privacy was intentionally eroded, and this is just one example.

Personally, on ethical grounds, I could never have designed a system like that, with so little regard for others, externalising private information so that a permanent record is kept. Once private data is exteralised, who knows where it ends up, even if it is in the name of some good cause (eg an improvement in therapy). Plenty of people warned of these sorts of outcomes.

At this point, if you care about your privacy, you really only have the option of not engaging with the system. Or engaging as little as possible.

> Personally, on ethical grounds, I could never have designed a system like that, with so little regard for others, externalising private information so that a permanent record is kept.

My bread'n'butter is patient systems. I cannot think of a way to say this that is not patronising or condescending on some level. Your suggestion will not work. At all. On any level. If we implemented a system like this people would die. Hospitals and Doctors would be sued to oblivion, and rightfully so, but only if they don't succumb to bankruptcy due to malfeasance and incompetence first.

Ethically building a patient administration system requires that you collect relevant information, that is patient-centric, and that identifies fully the patient, their needs, their location and their past episodes of care.

> At this point, if you care about your privacy, you really only have the option of not engaging with the system. Or engaging as little as possible.

The spectrum between privacy and effectiveness with patient and clinical systems is simple and stark. If you want absolute privacy you will receive care that will be truncated, untailored, unfit and unlinked.

So, what you're effectively saying is that if you want to have privacy you can't get medical care?

You can't get medical care efficiently and accounting for your specific situation. Sure, you can have a limb set after a mild injury without extra information. But anything long term or needing specific management will get complicated.

But we had medical care in the past that somehow worked without all of these digital systems? Was that care significantly less effective because of no digital data? It was less efficient, because you had to carry your documents around yourself, but I'm not sure that the care was significantly less effective.

I'm sure that it makes a difference to some people, but so does the vulnerability of privacy. How many people will simply not see a doctor because they're worried about this?

> It was less efficient, because you had to carry your documents around yourself, but I'm not sure that the care was significantly less effective.

Also your healthcare providers kept their fully-identified records.

And, yes, it was signficantly less effective with higher error rates, etc.

> How many people will simply not see a doctor because they're worried about this?

Very few, I suspect. None that I have ever heard of outside of people with significant anxiety disorders (this is literally true, and not my implying anything).

I don't mean that they will never see a doctor. What I mean is that when something is embarrassing they won't see a doctor, particularly when it comes to mental health.

No, what I am saying is that if you want complete privacy you can't have effective care.

Effective care requires knowledge of patient history, co-ordination between providers, etc. Your general practitioner needs to identify you to a downstream specialist using a strong-identifiable source. Your hospital requires knowledge of your allergies, of your heritage, of your past medical history, etc, in order to ensure you receive the best therapies and medicines. This does not even touch of things such as funding models or holistic healthcare plans.

The best any care provider would be able to do, in lieu of a trustworthy patient data source, is to offer general medicines and stabilisation.

I was on the back-end of a large electronic health records implementation. I'm not actually sure better care resulted, and the security was that dystopian type, ridiculous and insecure at the same time (we had to downgrade some systems to connect).

At least in this mental health practice, you charted on paper / locally to the providers systems. We had a billing team (in old model) that only uploaded key patient info (MRN / DOB / Service date / time / billing code) to a billing system. This was done using billing slips that went to someone trained on it (who could handle all the weird hassles around eligibility etc etc).

Provider would actually talk to patients etc etc. The notes were pretty focused afterwards. And yes - pretty secure - it was actually hard to just browse around - providers locked up their notes in their office, and their office was locked (we had a three lock rule -> front door with alarm (metal gate), office locked, file drawer locked.

What people don't tell you is with the electronic health record, they also required that all these required elements be "charted" - on EVERY visit. So in new system pretty soon charts become a pages of boilerplate per visit - copy and paste stuff. It was not useful anymore to do a case history from this chart.

So we made the admin folks happy, but what a trash experience - the EHR folks are selling bills of goods and the admin folks implementing and the compliance folks mandating endless boilerplate and macro entries to get anything approved are wasting all our time and money.

I got out, never felt better - the people were great, the ordered from on high decade old java app through a double VPN that worked 50% of the time with no user experience thinking - a nightmare.

And in this new system, every sysadmin could basically snoop on anyone (all in the name of patient coordination) as could lots of others who just ended up with the extra permissions because the system was so locked down we all basically had to be superusers. To run billing reports you needed access to every record - so they had to give you these ridiculous permission levels. And to avoid QC issues billing staff are reading all the chart notes to make sure all the required boilerplate is in them. Such BS. This system was integrated with a lot of providers, so you could also see everything related to that person everywhere (all the office / admin / billing staff at literally every provider included). While a bit helpful if you had a billing issue (same unit type billed at an unapproved frequency) all the benefits focused on that type stuff (admin ease) and privacy was zero across that backend system.

> I was on the back-end of a large electronic health records implementation.

My organisation has done many EHR/EMR, PAS and EMPI implementations using systems from third party vendors (i.e. I don't have any dog in the which-system-is-best fight). With modern systems (i.e. applications developed during and after the HIPAA act) we have seen significant reductions in error rates relating to drug interactions and dosing.

> What people don't tell you is with the electronic health record, they also required that all these required elements be "charted" - on EVERY visit. So in new system pretty soon charts become a pages of boilerplate per visit - copy and paste stuff. It was not useful anymore to do a case history from this chart.

I did not know we were meant to keep this a secret. Yes, it is important that you record every encounter with "boilerplate" code. There are funding impacts (as case complexity rises with these lifestyle and prior history codes). If a patient presents with a cough and blood in the sputum, it is important to know that they were once a smoker. If a patient presents with a broken leg and they have a history of diabetes, their treatment will be considerably more difficult and expensive.

> And in this new system, every sysadmin could basically snoop on anyone (all in the name of patient coordination) as could lots of others who just ended up with the extra permissions because the system was so locked down we all basically had to be superusers.

I have worked on these systems as well. I find more recent systems to be far better better at accountability with regards to patient record access tracking. It has been a long evolutionary path, however.

Mental health I think is at least somewhat different. I'm surprised this hasn't been studied at least a little. A fortune in implementation costs (system I was stuck with was 10 years ago now - absolute trash / hell).

The patient wants time with their clinician. So in a 20-30 minute visit either the clinician has to be busy charting away (we called them progress notes) or you get actual patient time and more summarized to the point notes. Why can't charts include decision useful info.

For example, if a patient has 5 objectives in their plan, why make EVERY 20 minute encounter go over all these objectives yadda yadda - is it unfair to expect the clincian will be working on these issues during their visit. Now every progress note has to have. We discussed patients success and potential tools to help them improve in their ability to control X, including various strategies and evidence tested techniques shown to demonstrate good results in this area. We discussed patients success and potential tools to help them improve in their ability to control Y, including various strategies and evidence tested techniques shown to demonstrate good results in this area.

This was govt delivered / managed care BTW - so in reality, the EHR made clear that they gave to craps about patients or outcomes and just wanted to check boxes, so everything was both insanely detailed and offered no decision usefulness.

The tell is that most of these systems have been total top down forced (from national level). That's a good good sign there is not much natural desire for them.

In other fields you get bottom up adoption of tools - a proof in the pudding point of evidence that folks find value in them (beyond the admins).

> Mental health I think is at least somewhat different. I'm surprised this hasn't been studied at least a little. A fortune in implementation costs (system I was stuck with was 10 years ago now - absolute trash / hell).

Yeah, MH is an odd beast. I think the slowness of health data change is exacerbated by the complete lack of funding to this area (at least in countries with public MH services).

I appreciate your being honest about how the system works, and that part of its function is to aggregate data.

I don't think the system can work in the ideal way I would like - the system's priority is the system itself, regardless of the wishes of the individual. As you say, doctors would be sued. I would say that suing, etc relates to the culture that has grown up around the system. And perhaps the medical system was always this way - ie system-centric, rather than patient-centric. With the onset of the 'IT age', we get to see that system-centric fruit fully 'ripen' such that everyone's data can be seen by anyone.

You might say - as I do - that it is for the person who is being treated to be the collector of their information. A different culture would have grown had we had the patient at the center of our considerations.

I'm sure people have been warning all the way down the line, about the issues over privacy. It is frustrating that at every turn the expediency over the system overrides all other concerns. After, what 100 years(?) we find ourselves where we are no, with the patient having no control (and often no knowledge) of the issues that relate to them, while the system has it all. I would go further and say that this outcome is by design, as those running the system - those who govern us - would prefer that we were ignorant while they are informed. Its pretty dystopian anyway.

> After, what 100 years(?) we find ourselves where we are no, with the patient having no control (and often no knowledge) of the issues that relate to them, while the system has it all.

I'd argue this, but I recognise I am in a privileged position of knowing how the systems work. HIPAA (in the US) and similar legislation in other countries actually puts a lot of power in the hands of patients - if they know how to use it.

You are never going to be in the situation where the patient controls their data completely (what happens if they are non-responsive, drunk or psychotic and unable to legally consent to an intervention they desperately want). I think we shall move towards access to data, and possibly interpretation of that data, but not ownership. Control of the data will always come with caveats, as the body paying for the treatment will always assert their right to how the data is transmitted to minimise costs.

this is a strawman argument.

Ppl will likely die because of this leak, I don't think there was any informed decision weighing the risks of both approaches before making the choice.

Every year I see leak after leak in medical data, I am only an developer not in the industry, but the nature of the leak has always indicated massive incompetentence and poor design or ops, rather than than real need for patience care.

Storing data in public S3 bucket has nothing to do with patient care, unwilling to invest to upgrade from windows XP has nothing to do with abiltiy to give care. Ransomware attacks because of aging stack has nought to do with privacy or care.

There is very very little need to aggregate data given the risk of leaks, and very little value to any single patient when his data gets aggregatated. A system not influenced by pharma or software industry would make it incredibly expensive or hard to collect aggregate data, while keeping individual records usuable

The harsh reality is hospital administration and regulation tends to be skewed with doctors, it is the same with legislators who tend to be lawyers, or professional management tend to be sales than tech. None of these groups understand the nuances of tech always to manage or regulate them better, sometimes they are smart or trust their advisors and get it right, but it hit and miss.

Data is money today , so industry is not interested in better safety of medical data either, preventing aggregate collection will loose a lot of value for med tech companies.

> this is a strawman argument.

I'm reading this as a header declaration.

You are arguing a range of items without actually touching on my point - that health data patterns require a link from encounter and observations back to a patient record. I think that you are arguing a number of these points with incomplete information (i.e. that you have little understanding of the pressures which result in the continued existence of Windows XP within the health ecosystem), and on other points you are completely missing the point (storing patient data on the cloud is a whole different argument).

> Data is money today , so industry is not interested in better safety of medical data either, preventing aggregate collection will loose a lot of value for med tech companies.

The data has relatively minimal value for the makers of patient record systems. The value of these systems are in the licensing and ancillary/secondary services.

I agree my understanding is limited into your industry.

I don't need to have an understanding, I am just a regular Joe who's data security your industry does not give a thought about and his data leaked constantly[1].

After so many leaks, I do not see an acknowledgement of systemic issues. I see no discourse on how the industry can step up and improve their security practices. I see no significant update to regulation in response to any of this.

If your industry cannot move fast enough with the consumer tech industry then you should not be basing your tech stack on a OS like XP in the first place , XP always was going to have limited window of mainline support.

Core banking is perfectly happy using COBOL and zOS for the last 50 years. [2]

If you don't believe the architectural choices the industry makes and attitude towards tech has anything to do with the data security problems there is nothing I can say to convince you.

[1] I am focusing on one thing only security not privacy or anything else, i.e. unintentionally sharing data.

[2] it is not that fin tech is without its problems either, however in general fin tech has responded to security concerns.

> If you want absolute privacy you will receive care that will be truncated, untailored, unfit and unlinked.

Are you sure your expertise in this area is up to date?

Even with "unlinked": Signal can do discovery without the server storing a social graph. There's nothing stored on a server for a hacker to ransom.

Rank speculation, but I'd imagine there are current designs even at Apple that protect user's health data, and those designs contradict your claim of a shrug-while-we-work dichotomy between "privacy and effectiveness."

Edit: clarification, added a barb :)

> Are you sure your expertise in this area is up to date?

It's a constantly changing field, but Health data systems are not the fastest changing field. Change is bound to lower pace layers (governance, usually) and so the capabilities of these systems are ground slowly but incredibly fine.

> Rank speculation, but I'd imagine there are current designs even at Apple that protect user's health data, and those designs contradict your claim of a shrug-while-we-work dichotomy between "privacy and effectiveness."

Cool. I always enjoy new ideas for how to do things. If you can solve these issues, you would upend a HUUUUUGE industry overnight and would be richer than Bezos.

To add on to what you're saying if there isn't there should be legal liability for these software systems in the same way civil engineers have legal liability, from my limited understanding.

I.E. software engineers can become ... real engineers!

I built an app for micro-jounaling emotions in 2012 and while I've felt so grateful to be using it and excited how it could help so many people, I have also felt terrified at what might happen if such deeply personal information leaked. I tried to make it local-only, using an encrypted database and a required password, and yet I still feared that the device could get hacked and it would lead to suicide, murder, overdose, etc., if not war, depending on whose phone it was.

At what point should we refrain from releasing a tool that may powerfully help people but also powerfully hurt people?

Thanks for doing that.

I deliberately avoided reading this thread for quite a while, because I could see where it was going. It's pretty depressing how willing (and even enthusiastic) we can be, in dehumanizing other people.

I have been deliberately vague, in specifics, because even a bit more specific could lead to people figuring out some of the identities of the folks I have known. I have enough respect for these people, and for the extreme damage that can be done, if it leaks, that I'm willing to take shots from the "Give us concrete examples, or you're a liar!" crowd.

Here's an example of how tools could be misused. One of the things that I've done, over the years, is design a Web-driven, decentralized system for aggregating 12-Step fellowship (drug recovery) meetings. It's pretty much becoming the de facto world standard.

In some nations (I'm looking at you, Philippines), people can be killed, just for being drug addicts. In other nations (I'm looking at you, Mexico), drug rehabs and recovery gatherings can be targeted by mass-murderers, in efforts to kill just one member.

It's entirely possible that the tool I wrote could become a "murder menu" for these places, and that is not a thought that I take lightly.

Nevertheless, those are "might," scenarios, and there's no question at all, that the tool has saved many, many lives.

I don't think that it's being used in the Philippines, but they are considering using it in Mexico.

I did my due diligence in the design of the tool. A number of compromises needed to be made, in order to ensure that it would be adopted by its intended user base, but it's pretty hard to abuse. Also, the team that took over after I turned it over, includes a number of security experts, so I leave it in good hands.

I can't tell you what to do, but, if you feel that you have done all you can, legitimately, to secure it, then you can probably confidently release it, maybe with some published guidance, outlining risks.

This may be the first time since I've built that app that I've interacted with someone who may understand the level of fear and anxiety I've felt when thinking about releasing it. Many people have told me, "Oh, don't worry, just release it!"

I feel grateful that you've not only built the tool and put it out there, but that you took the time to share with me a little of your story and that it sounds like you have also felt the weight of such a decision. I'm sure other people feel it as well, I just rarely, if ever, have heard someone articulate the saving a life vs taking a life aspects of such technology.

Thank you.

Good luck, Jim.

You sound like a decent chap. I like “martial art for an open heart.”

We can use as much of that as possible, in today’s world.

Thank you, Chris :-)

I know I still need it and imagine there is always at least one other person who may as well :-D

You sound like decent chap as well. I have a lot of friends who have benefited strongly from the 12-step process. I also imagine I might have other friends in some of those nations you mentioned who benefit from the care you put into protecting their privacy.

Good luck to you as well!

> The ability to digitize and aggregate the data, and maybe even subject it to some kinds of AI, might result in massive improvement in therapy.

We can always say "might" but is there any evidence of this at all? On what theory would you even think it would?

>The ability to digitize and aggregate the data, and maybe even subject it to some kinds of AI, might result in massive improvement in therapy.

But do we need new therapies? CBT, mindfulness, etc - there are a lot of therapies that work VERY WELL. Especially (and this is anecdotal, from friends), combined with things like replacing alcohol with marijuana, reducing or eliminating caffeine, eating well (avoiding sugar / white bread and other carbs), and getting regular exercise.

But we live in a sick society, where the above are often untenable.

Therapy? That's 1:1, time intensive, and insurance abhors it if a pill can do the job.

Marijuana? Illegal, or expensive and over regulated when legal.

Exercise? Hard to do if you have long hours and a long commute.

Healthy food? Expensive, sometimes hard to cook. (I looked at an Indian recipe book for vegetarian ideas and many of the things I love, like palak paneer, are very labor intensive).

But put someone on antidepressants or other pills that are covered by insurance or purchased in generic? That's a simple solution, so it's what's used, even as patients suffer HORRIFIC symptoms going off these meds when they do not work.

Imagine mustering the courage to ask for help, being given a pill that does not, and makes you have trouble doing the work that gets you insurance.

And then not to mention the therapists themselves - having to find the right one, and that's if you just don't mesh and don't have a very bad experience.

I'd argue a lot of what we call "depression" or "anxiety" are actually quite normal responses to a sick system in desperate need of change and people are often "nudged" by the system to do the "wrong" thing then punished for following the path laid out for them.

> The ability to digitize and aggregate the data, and maybe even subject it to some kinds of AI, might result in massive improvement in therapy.

This 100% is not true.

We can't properly even see rates of STI increases in communities quickly, so worrying about an AI that would have IQ's at human level, which is decades away, is not relevant.

This 100% could be done with written notes.

Cost is the only factor.

Making a therapist cheaper will save lives.

I suspect electronic notes saves pennies in the dollar, compared to the other expenses of therapy.

I saw a couple of comments complaining about making people into data points, and that this is dehumanising. But I do not see this.

Growth of data based technologies and information surely create risks to privacy, which is another story. However, treating people data as just data is neither new nor dehumanising. Science does that with everything and that is called abstraction. Just make sure that personal data protection measures are there.

Not much has changed since Nellie Bly. Several are still locked up with no jury trial - just a rubber stamp by a magistrate to whatever the prosecutor asks for - the modern day equivalent being a cut and paste between Word documents.

We're not talking about the justice system here..

Nelly Bly was an investigative reporter who was committed to an asylum by a judge, more at linked page. In the US, for decades, jails hold many more mentally ill people than psychiatric facilities do.

https://en.m.wikipedia.org/wiki/Ten_Days_in_a_Mad-House

Not sure you meant to imply otherwise, but just to clarify: Bly intentionally got herself committed for an undercover assignment.

> That's not hyperbole.

In the 50 some odd years I've been on this planet, it has been my observation has been most every time someone says something isn't applicable to their argument at the same time they are making the argument, it is.

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