Editorial: Lancet Psychiatry: "Trust and transparency"

"Medicine is a practice built on trust—from patients and from society in general—and this is especially true for psychiatry, in which trust has been forfeited in the past. Transparency is the foundation stone of trust. In research, this can be manifest at various stages. Clinical trials and, increasingly, other studies should have preregistered protocols against which the final write-up can be checked, so that findings not meeting the researchers’ expectations are not hidden. Psychiatry does not have objective biomarkers; outcome measures are therefore based on so-called self-report. Whether the data are collected by a clinician, a trained researcher, or the participants themselves, they come from the participant describing their mood, feelings, and state of mind. We trust that the different scales used in psychiatry research produce findings that are generalisable for, at least, certain subgroups, if not whole populations. Validation studies, including of translations and cultural adaptations, are an important element in building trust in the research process."

https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(21)00131-0/fulltext

 

Hopefully the right people can heed these words.

How can we improve this situation? First, build trust with all members of the mental health community, by showing that data will be handled with care, but also teach that the most valuable data are those with the fewest restrictions on reuse.

[...]

Above all, researchers need to honour their commitments to participant privacy while also being generous with sharing data to maximize their impact. Journals can encourage but cannot enforce this alone.The research community must work towards a clear policy that facilitates the optimal use of the information provided by participants to build and maintain trust in the whole research process. George Orwell wrote that “Good prose should be transparent, like a window pane.” The same is true of good science.​

The editors particularly mention how useful longitudinal data from wide, well established participant cohorts can be in unexpected situations like the COVID pandemic. They cite this July 2020 study based on the cohort from the UK Household Longitudinal Study: "Mental health before and during the COVID-19 pandemic: a longitudinal probability sample survey of the UK population", which was co-authored by Wessely and Hotopf. Somehow, their past work must have fallen in the editors' blind spot.

 

Its a fail to not have at least some objective measures. Medical visits, hours worked or studied or otherwise doing something, activity measures, money earned, money spent . . . these are just some of the possibilities. There should be research on what measures are most effective, and how to combine them with qualitative outcome measures.

 

Pretty funny coming from a Lancet subspecialty journal. And what if you write to a government funded principal investigator of a trial and ask for summary data, not even raw data, and he tells you it no longer exists even though the paper was published 2 years ago? What recourse is there against such fraud? Here I am not even referring to PACE btw but another incident I am familiar with unrelated to ME/CFS.

 

Reading it again and it frankly comes off as insincere. It speaks of mistakes made by psychiatry in the past, pretending those are only in the past. Most of those mistakes are still around, they simply changed packaging. Sometimes only the words changed, not the definitions. And they don't even mention any of those mistakes, basically trying to say that there is blame on all sides and people should learn from everyone's mistakes without having to go through those mistakes in painfully specific detail, to make sure lessons are actually learned.

Frankly it reads a lot like Greenhalgh's op-ed for patient-led research, which specifically named us as an example of failure, not on medicine's part, the failure is us, we don't actually count in that call to involve patients. Because? No reason, it just does. Arbitrary and without any accountability.

And of course doing this PR exercise while PACE still stands is just insulting and completely undoes any pretense of sincerity. What they mean is to get away doing the things they have always done while pretending they are not doing those things.

Basically's BP "we're sorry" campaign. Which is what already happened, the horror of psychiatric institutions may have mostly gone away in letter, but the spirit is still very much there, right along with complete lack of accountability or the absence of any serious process in labeling millions of people as mentally ill using as the only piece of evidence that medicine has not figured out what is wrong with us by barely trying and giving default prominence to the usual psychobabble that dates back a full century, unchanged for the most part.

And pretending that there is any shared decision-making in psychiatry is just insulting to our intelligence, completely undone by the common habit of dismissing anyone who doesn't agree with the beliefs of the day in psychiatry as militant activists, not even patients. Psychiatry keeps treating their own systemic failure as a messaging problem, just like it treats modern hysteria the same: a problem having only to do with using the right words, the right description that will turn the massive power imbalance between patients and physicians into a cheap imitation of shared decision-making.

This is nothing but cheap talk. All hat no cattle, as they say. Boooo, Lancet. Boooo.

 

The further down the BPS rabbit hole the less transparent the prose, never mind the science.

 

This really does not follow. I can't work out if the flawed conclusion is deliberately meant to mislead, or simply not understood.

Just because there are no biomarkers, does not mean there are no objective measures - much more objective than subjective questionnaires anyway. If someone is being treated for depression, low self esteem, etc, then number of times went for a walk, visited friends, went out shopping, etc. ... all sorts of things could give pretty objective measure.

The key thing is that whatever is being measured, it's raw value naturally occurs as unambiguous numeric values. Three times visiting friends; twice went shopping; walked 3.5 miles on two occasions. Crucially these things do not rely on highly subjective interpretations of mood, feelings, state of mind, etc. being vaguely ascribed numeric values. Numeric values do not of themselves give such measures authenticity, just an illusion of it to the gullible and deluded.

I find it disturbing if people believe objective measures are not possible in psychiatry, due to a lack of biomarkers. There seems no will to understand.

 

Its worse than that. There is a reason the US government had to do a report on biomarkers - even in the NIH people did not understand what a biomarker was.

ME has no diagnostic biomarkers. However a biomarker is just a statistically significant biological abnormality. We have thousands. Its just that not every biomarker is unique, nor does every potential patient have the same set of markers. For example, going from comments by Ron Davis, ME has lots of biomarkers in common with sepsis and African sleeping sickness. We probably cannot use any of those diagnostically, though I suspect otherwise, because they are not unique to ME. I suspect otherwise because it would take someone very un-astute to fail to distinguish between sepsis, African sleeping sickness and ME.

Another type is outcome biomarkers. I am increasingly concerned that medical science goes astray when it locks onto some outcome marker prematurely, like blood glucose in diabetes for example. Its an important marker, but may not be the most important marker, especially when considering long term outcomes. For example, I recently became aware that its highly unlikely that insulin resistance has anything to do with inability for cells to take up glucose as a primary problem - that is secondary. The concentration of glucose inside muscle cells in diabetics is so high that if it was a blood concentration they would be dead. Stone cold dead. Yet we often give insulin to force even more glucose into the cells. (I have not seen data on other cell types, but I presume, at this point, it would be similar, though there are probably other critical cell types that need that blood glucose, such as nerve cells.)

So lets take major psychiatric disorders, like depression. There are lots of biological abnormalities in depression. With work they might use those markers to create some kind of assessment of a depressed patient. Other psychiatric disorders might have no markers, or at least nothing we can find. That is because they are not proper medical diagnoses, but are probably part of a psychiatric cultural phenomena. Like the attempt, which I think failed, to make PMS a psychiatric disorder. They could not find anything other than the known biological mechanisms. What is or is not a psychiatric diagnosis is a limited consensus decision, not an objective reality.

ME has oodles of markers. They are not useful diagnostically, though at least a couple of markers are under current investigation. My understanding of many so called functional disorders, like IBS for example, there are also a great many biological abnormalities. We just don't understand the mechanisms fully.

Once we have a good understanding of mechanisms in any specific diagnosis I suggest we will have diagnostic biomarkers. However once we do that then the psychiatric component of a functional disorder is done with. It becomes a biological dysfunction, not a psychiatric one. I have yet to see any proof, ANY proof, that even one psychiatric disorder is not biological. That is an assumption based on a lack of evidence of biological causation, just as with the old views of diabetes, asthma, heart disease and cancer. Do we put those patients under only psychiatric care these days?

Patients with what we currently call psychiatric disorders deserve better science than they are getting.

 

Especially given the trend to abandon biomedical research and go full biopsychosocial. It's pretty popular right now and would essentially doom the profession to decades of even worse stagnation. Then again it has been largely stagnant anyway but the framing without regard for socioeconomic context, which obviously BPS ideology does not factor, would serve even further to trivialize serious illness while pathologizing normal behavior by simply not recognizing it has a rational cause.

And then of course there are the miscategorised diseases like us. This would be the main outcome. At least without Covid-19. It's incredible how much it could derail the BPS ideology moving forward. Enough so that it may actually do enough good to outweigh the massive suffering the pandemic is causing, the harm caused by psychiatry's constant empire-building really is that bad. A lot will depend on how medicine reacts to Long Covid. So far... yiiish. The power asymmetry remains fully one-sided, despite fluff like this pretending there is such a thing even right now.

 

I think that "lessons will be learned" is just a hackneyed cliché that never seems to actually change anything, whether it is in medicine, law, government or big business. As far as I am concerned, each time I hear it I know that nothing will really change to improve the situation under discussion, and it is tantamount to being an outright dismissal of the people who are aggrieved.

Edit : @rvallee I wasn't having a go at you about the phrase I commented on. I know it is standard BS produced by many people found to be in the wrong.

 

There are certainly objective outcome measures of the consequences of psychiatric intervention.

They just don't want to use them.

 

"Authors are not expected to justify their answers; simply to report their policy. Is this enough? As with many guidelines, compliance is variable. A major problem is that even allegedly freely available data are not in a format that can be easily reused, often because of insufficient metadata—labels, codes, etc. Another problem is that authors might prevaricate or simply not respond to requests for data sharing."

or claim to have 'retired'.

eta: I wonder who wrote this piece; I can't see an authors name anywhere.

 

much simpler thought how can a field that has been built on deliberate fraud and the opinions of those privileged with good health actually be considered as a science at all .