Confused About Mental Health Policy (TW: Politics)

[chibam]

With the election looming, a lot of groups that focus on mental health & suicide have been throwing their 2 cents into the ring as to how a voter's interest in mental health ought to be influencing their vote. I'm subscribed to a fair few newsletters, ect. pertaining to mental health, and reform of the mental health system, and what frustrates me is that none of this material really tells you what's going on. They deal only in vagueries, or jargon that, I believe, few laymen would be able to properly understand.

This is a big deal. We need to know where our system is going and what our leaders are planning. Especially since there have been major calls for us consumers to be at the heart of shaping the future of the mental health system. But how can we participate in these conversations if we don't understand them?

One of the big names in mental health reform, Ian Hicke, recently made a statement about how his envisioned reform involves "new ways of coordinating services" and the adoption of resources like "big data... and new technology." But what does that actually mean? "New ways of coordinating services"? What new ways? What, specifically, does he want us to start doing that we aren't doing today? Give us some specific examples, please!

Likewise, "big data"? What sort of data? What sort of information are you going to record from us, and how will that be used?

On the surface, I can see how the ethical usage of recording a patient's needs, ambitions and character into "the cloud" could be an immense asset to the patients. If your going to match your patients with spouses, families, communities,workplaces, ect. that properly reflect who those patients are and tend to their personal needs, you probably are going to need a database that archives the character traits of numerous individuals and locales.

But is that what these leaders actually mean when they advocate for "big data"? There's no clarity to those sorts of ambiguous statements. And when you wade into the lengthier documents that these people publish, it doesn't get any better, because although they explain themselves with more words, it's all jargon, so you end up with no further clarity then you began with.

I'm no genius. But all the same, I can't believe that I would be unusual in my inability to understand this stuff. I reckon it would go over the heads of most laymen. It's almost like the conversation has been engineered to prevent the real, everyday patients from getting involved in it. And that's just wrong.

I just wish these people would talk in plain, simple english, so we all understood what, specifically is happening and what's being proposed for the future.

[Gwynn]

Big data is large, fast, or complex to understand using traditional methods.

Algorithms developed from millions of patient health records have been reported to predict suicidal behaviour more accurately than traditional clinical assessment.

Computerized rating of clinicians’ notes can uncover the sentiment of clinical encounters and predict subsequent suicide.

Machine learning can identify symptom patterns predicting a patient's response to specific depression treatments.

https://jamanetwork.com/journals/jamapsychiatry/article-abstract/2726612

Hope this helps in some way. Perhaps try writing to Hicke and ask him to clarify?

[chibam]

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@Gwynn wrote:
Big data is large, fast, or complex to understand using traditional methods.

Algorithms developed from millions of patient health records have been reported to predict suicidal behaviour more accurately than traditional clinical assessment.

Computerized rating of clinicians’ notes can uncover the sentiment of clinical encounters and predict subsequent suicide.

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Now that is horrifying. Building a system not to help me, but to control and oppress me; to violate the privacy of my mind and sabotage my own personal choice to end my suffering. The great innovators of our time could be devising ways to make life actually worth enduring; instead they are fixated on building more secure shackles so that the people who hate being here can't escape.

What happens when the computers inevitably get it wrong (robodebt, anyone?) and you wind up with innocent, totally non-suicidal people being locked down in suicide watch? Who answers for those violations of constitutional freedoms?

It's not the first time I've heard of this sort of 1984-esque surveillance being proposed as a "remedy" to suicide. But I am totally astounded that this is what Hicke intends to use big data for.

Why on earth would a suicidal person risk visiting a doctor or therapist, or calling Lifeline, or even posting comments on the internet, if they know that the system is geared to scanning the nuances of what they say, and sabotaging their only definite escape route from their horrid lives? If consealing your suicidalness becomes infinitely more complicated then merely not mentioning it? Not that turning to the system was ever a wise choice to begin with, but under this regime, it will become as dangerous as can be. You'd be a fool to ever open your mouth near anyone even remotely connected to the health industry.

I seriously can't believe we are going in this direction.

[Historylover]

@Gwynn, for my mind, if a psychiatrist doesn't know what's going on in the mind of a patient without any algorithms, he/she should enter another occupation. That 'seniors' in the medical field think that is the best way to go is worrying to say the least. What do these folk learn in university? How to do algorithms?

Perhaps they should use their algorithms to assess the progress of patients over time to determine improvement/actual, indisputable cure (rather than just 'change'), and the reducing need for medication and consultations, and see which therapists' patients are having bad outcomes, and how many suicides are the result of ineffectual therapies and therapists.

We're supposed to have come a long way since Jung and Freud etc., but they just seem to have created a heavy social congestion of "mental illness" with no clear path, just more experimentation, algorithms, medication and theories. 

[Gwynn]

I'm sorry to frighten you, but that's what Big Data is already being used for, @chibam , as seen in the citation I gave.  That may not be the precise use of Big Data that Hicke is going for, but as it is being done overseas, it would be reasonably easy to redo for the Australian context.  The only way to know for sure is to contact him and ask.

In regards to the "Machine learning can identify symptom patterns predicting a patient's response to specific depression treatments." part, I think that's a good thing, because if you knew that if you got a sick stomach within 2 months of starting on a medication, you would be far more likely to end up with painful stomach ulcers, you could potentially change your meds before you got to that point.  @Historylover , I think that this is like what you were saying about assessing the progress of patients over time? 

[chibam]

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@Gwynn wrote:

In regards to the "Machine learning can identify symptom patterns predicting a patient's response to specific depression treatments." part, I think that's a good thing, because if you knew that if you got a sick stomach within 2 months of starting on a medication, you would be far more likely to end up with painful stomach ulcers, you could potentially change your meds before you got to that point.

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It still sounds like a veiled message that this technology will be used to control, not assist, patients. It all comes down to the question of: Who decided what responses are good responses, and which ones are bad ones? The patient, or the therapist? I think we both know the answer to that question, in terms of these proposals.

And, as @Historylover has alluded to, why do we need to jump straight to using computers to predict the outcomes of arbitrary treatments imposed upon patients? Why can't we just take the obvious course of actually giving the patients what they ask for?

In this regard, "big data" may potentially have actual merits (although it would still be open to horrendous abuses). Being used as a database through which therapists can potentially find the things that their patients need; such as spouses, households, workplaces and communities. It may also be used to identify loopholes in the system that may be assets to the patients (think of that scene in "The Incredibles" where Mr. Incredible told that poor little old lady exactly how to exploit the loopholes in his company, in order to get the resolution she needed), and other obscure solutions to patients' grievances.

It's nigh on 10 years now since I was pronounced "cured" and let out of therapy, and despite all the talk of "reform", the broken essence of the system is, seemingly, unchanged. Instead of actually helping people, it seems it's agenda is all about herding them down courses that are arbitrarily decided by the therapist before the patient has even told them what they need.

What hope is there?

It took me 7 years to get nowhere politely enduring therapy; it's taken me another 10 years to get nowhere, waiting for the system to actually commit to helping people in need, rather then exploit them. How long will it take for us to actually get somewhere? Will I ever even glimpse a good mental health system in my lifetime?

I'm never going to get a family. What's the point?

[TideisTurning]

I can hear very clearly from your words how much of an impact this has had on you @chibam, and I'm sorry. I'm also getting a sense of your hopelessness and helplessness in relation to system change, which to me, seems completely understandable. You've mentioned a desire for 'good' mental health, and I'm really curious as to what this might look like for you?  

[chibam]

@TideisTurningWell, first of all, it's a system that is not rooted in an agenda to constraining people into survival; whether they want it or not. It acknowledges and respects each and every patient's preferance for death over certain fates, and respects and protects their rights to end their own lives, should they become stuck in a standard of living that is worse then death.

It's a system where a patient can lay out frankly what they considder to be the boundaries of a life worth preserving; and the mental health system is legally bound to only handle the patient's case within those constraints. If a patient tells their therapist "I'd rather be killed then be stuck at a desk job", then the mental health system should be legally bound to avoid assigning that patient a desk job even more aggressively then it would avoid perscribing them a medication that they knew would likely be fatal.

And it would be a system that doesn't jerk people around. It would be a system not oriented towards bullying people into "coping" with their awful lives, but to actually fixing those awful lives. It would be a system where they actually do the best humanly possible to fix your problems. So if your living in the wrong household, they do their best to reassign you to the best household they can possibly find. If your unemployed, or in the wrong job, they reassign you to the job that best suits your needs and ambitions. If your miserably single, they do their best to track down a match for you and set the two of you up as a couple. If the government or some other big organization (e.g. banks) is giving you grief, they step in and sort the beaurocratic mess out. Obviously, that's only a small example of the dire problems they would address.

And it would directly address the patient's self-stated needs as the first and foremost approach to treating them. It wouldn't carry them off on any mindless detours to begin with (e.g. "breathing exercises", "coping strategies", "behavior modifications", ect.); it would do the job that the patient wants it to do.

[TideisTurning]

I can see how much thought and consideration you've given this @chibam. One thing that really stands out for me from what you've said is a system that is person-centred. A system which listens to the people it supports to ensure the support received is in line with what they want for themselves, rather than having 'ideal' outcomes dictated by someone else, where that may not be in line with what the individual wants. What a great vision! 

[Historylover]

@Gwynn. I'm more on the side of patients than therapists. They can come up with all sorts of 'treatments, medications etc., and have been doing so for a very long time, but the mounting MH crisis is more the result of ineffectual treatments and lack of  accountability than lack of finances, accessibility or algorithms. They keep changing the approaches without addressing the outcomes. 

Where is the accountability? Patients can become 'locked in' to continuing treatments, medications/changing medications, assuming they are being cured, that the therapist knows what he/she is doing. 

There is a big difference between being treated and being cured. The former is ongoing, the latter has a solution–and it is value for money. Competence and accountability is what is lacking, not algorithms. 

And personally, I don't kowtow to persons of medical authority. It only reflects their position, not their competence or integrity. Many people are in positions beyond their ability, in my opinion.