Sense about Science (UK) and subjective outome measures

[rvallee]

This post has been copied and following posts moved from this thread:
What we're not being told about ME - UnHerd (Tom Chivers)


Uh. Interesting. Although the 2nd tweet really misses... all the points, and argues impertinent ones instead. As is BPS tradition. I really don't think that there is a basis to claim that a shift to subjective measures was ever especially welcome other than by the BPS ideologues. Frankly an odd point to make, if anything we are constantly begging for more rigorous science, and the same with chronic pain, where a biomarker or some other objective way to assess pain would be a true paradigm shift that would change everything.

For anyone not familiar with, Science about science has been very vocal in defending the BPS model, the PACE trial and generally the bad pseudoscience of the BPS model. At least the UK chapter, which this is, I checked.

 

[Arnie Pye]

That tweet from Sense About Science (2 posts before this one) saying that subjective measures are welcomed by patients is absolute nonsense. It is just a way for the medical profession to stop actually trying to cure anyone, and to make a blanket prescription of anti-depressants and exercise to everyone with a chronic illness irrespective of what is wrong with them.

Who are Sense About Science and who funds them?

 

[Adrian]

That tweet from Sense About Science (2 posts before this one) saying that subjective measures are welcomed by patients is absolute nonsense.

They said that subjective pain measures were welcomed as patient centered they didn't actually claim patients welcomed them.

[edit]
It could be researchers who want to use them claiming they are patient centred.

 

[Ravn]

They said that subjective pain measures were welcomed as patient centered they didn't actually claim patients welcomed them.

[edit]
It could be researchers who want to use them claiming they are patient centred.

There probably are quite a few patients, too, who do welcome the subjective questionnaires. They think finally somebody is listening to them and they don't have the experience and science literacy to understand the problems.

Needless to say certain people are well aware of this and all too happy to exploit it, too.

 

[chrisb]

That tweet from Sense About Science (2 posts before this one) saying that subjective measures are welcomed by patients is absolute nonsense.

I don't think it said it was welcomed by patients. It said it was "welcomed as patient centred". It did not specify by whom.

 

[Caroline Struthers]

That tweet from Sense About Science (2 posts before this one) saying that subjective measures are welcomed by patients is absolute nonsense. It is just a way for the medical profession to stop actually trying to cure anyone, and to make a blanket prescription of anti-depressants and exercise to everyone with a chronic illness irrespective of what is wrong with them.

Who are Sense About Science and who funds them?

HAve just Tweeted something which explains

 

[JohnTheJack]

I think these lines by SAS are fascinating.

My own interpretation is as follows, given their political and sociological views:

1. Support for current model now untenable given criticism of obvious scientific flaws by people whom they would normally look to as allies. Role of Trevor Butterworth and SAS USA crucial but also Tom Chivers.

2. Switch instead from 'ME is medicalizing ordinary experience' to 'avoid indulging patients and look for more objective tests'.

3. Acknowledge there is possibility of pathological ME, but don't overdiagnose it and indulge 'chronic fatigue' patients.

I could actually live with this.

 

[MSEsperanza]

Uh. Interesting. Although the 2nd tweet really misses... all the points, and argues impertinent ones instead. As is BPS tradition. I really don't think that there is a basis to claim that a shift to subjective measures was ever especially welcome other than by the BPS ideologues.[...]

For anyone not familiar with, Science about science has been very vocal in defending the BPS model, the PACE trial and generally the bad pseudoscience of the BPS model. At least the UK chapter, which this is, I checked.

That tweet from Sense About Science (2 posts before this one) saying that subjective measures are welcomed by patients is absolute nonsense.

I don't think it said it was welcomed by patients.

Yes, but maybe it's how people mostly will understand it?

Anyway, if anyone finds it helpful, I try to collect suggestions how to respond to this kind of arguments here:

In the context of using objective outcomes not instead of but in addition to subjective outcomes, the quote is:

https://www.s4me.info/threads/usefu...omedical-me-research.21934/page-2#post-367975


Edited to add: Any help with that collection much appreciated.

 

[petrichor]

I think these lines by SAS are fascinating.

My own interpretation is as follows, given their political and sociological views:

1. Support for current model now untenable given criticism of obvious scientific flaws by people whom they would normally look to as allies. Role of Trevor Butterworth and SAS USA crucial but also Tom Chivers.

2. Switch instead from 'ME is medicalizing ordinary experience' to 'avoid indulging patients and look for more objective tests'.

3. Acknowledge there is possibility of pathological ME, but don't overdiagnose it and indulge 'chronic fatigue' patients.

I could actually live with this.

I don't think this is an exactly accurate portrayal of what they're saying. I think they're just saying that subjective measures were patient centred as a way to make a lot of researchers across different disciplines look good, they're not making an implication patients shouldn't be listened to. They sort of represent researchers and scientists, and in some ways are dedicated to increasing trust in them, so they aren't going to go making a bunch of them look malicious or like idiots. And the point about overdiagnosis is just a reference to overly broad criteria like the oxford criteria being used in research and clinical practice.

I'm not sure their social media person really knows what they're talking about honestly so I wouldn't really give much weight to what they tweet. It's good they retweeted that article though

 

[JohnTheJack]

I don't think this is an exactly accurate portrayal of what they're saying. I think they're just saying that subjective measures were patient centred as a way to make a lot of researchers across different disciplines look good, they're not making an implication patients shouldn't be listened to. They sort of represent researchers and scientists, and in some ways are dedicated to increasing trust in them, so they aren't going to go making a bunch of them look malicious or like idiots. And the point about overdiagnosis is just a reference to overly broad criteria like the oxford criteria being used in research and clinical practice.

I'm not sure their social media person really knows what they're talking about honestly so I wouldn't really give much weight to what they tweet. It's good they retweeted that article though

It is just my interpretation. It's based on the people involved and especially Tracey Brown who had very close ties with Michael Hanlon and was in my view the prime mover behind the Sunday Times article about harassment.

They refused to support Alem Matthees and they have also previously broken their editorial rules to enable Michael Sharpe to promote PACE .

 

[Dx Revision Watch]

I see that Dr Michael Fitzpatrick (GP and writer for Spiked since 2000) is still a Trustee of SAS.

Tracey Brown OBE* has been the director of Sense about Science since 2002.


Tracey Brown and Michael Hanlon co-authored this book:

'Playing by the Rules: How Our Obsession with Safety is Putting Us All at Risk'
by Tracey Brown (Author), Michael Hanlon (Author)

* https://en.wikipedia.org/wiki/Tracey_Brown_(scientist)

 

[Caroline Struthers]

I don't think it said it was welcomed by patients. It said it was "welcomed as patient centred". It did not specify by whom.

Typical weasel words so they can claim to have always been on the right side. Use the passive - "it was welcomed"..."mistakes were made" etc etc. Same style as Cochrane and BMJ who will never take any responsibility for the damage they have done.

 

[Hutan]

I really don't think that there is a basis to claim that a shift to subjective measures was ever especially welcome other than by the BPS ideologues. Frankly an odd point to make, if anything we are constantly begging for more rigorous science,

They said that subjective pain measures were welcomed as patient centered they didn't actually claim patients welcomed them.

In our conversation with @Hilda Bastian, she made it clear that the move to subjective measures involving patient reports was seen as a very good thing by consumer advocates - perhaps they even asked for them. It was seen as 'listening to the patient'. It just seemed that they did not give enough weight to the risk of bias in such outcomes if trials weren't blinded and/or there were not also objective measures.

 

[Adrian]

In our conversation with @Hilda Bastian, she made it clear that the move to subjective measures involving patient reports was seen as a very good thing by consumer advocates - perhaps they even asked for them. It was seen as 'listening to the patient'. It just seemed that they did not give enough weight to the risk of bias in such outcomes if trials weren't blinded and/or there were not also objective measures.

I suspect something also gets lost in translation as patients probably are saying that it is important to consult them on what outcomes matter and this gets converged into subjective measures. It sounds like bad science in terms of allowing bad outcomes. It is important to listen to patients in terms of the types of outcome (for example whether it is an increase in physical function, decrease in brain fog, reduction in pain, ability to stand up for longer) that matter and which matters most then those designing the experiment need to translate those requirements for endpoints into robust outcome measures.

 

[Sean]

There is a critical difference between patient reported, and patient preferred outcomes.

Might be some overlap, but they are not the same thing.

 

[Jonathan Edwards]

That tweet from Sense About Science (2 posts before this one) saying that subjective measures are welcomed by patients is absolute nonsense.

It is certainly nonsense in the sense that there has been no 'wider shift' to subjective measures. Subjective measures have been used all along and are critically important, but not enough.
I was trying to find out who tweeted that. It shows a remarkable medical science illiteracy.

 

[Jonathan Edwards]

In our conversation with @Hilda Bastian, she made it clear that the move to subjective measures involving patient reports was seen as a very good thing by consumer advocates - perhaps they even asked for them.

But it is a myth, isn't it? We have been asking patients about pain and fatigue since trials began.

 

[Jonathan Edwards]

3. Acknowledge there is possibility of pathological ME, but don't overdiagnose it and indulge 'chronic fatigue' patients.

I read the overdiagnosis comment, together with the one about subjective measure as referring to the PACE trial having been marked down on these grounds - with the risk the this meant that a subgroup who really would benefit from CBT and GET might not get it because of the evidence rating.

 

[rvallee]

That tweet from Sense About Science (2 posts before this one) saying that subjective measures are welcomed by patients is absolute nonsense. It is just a way for the medical profession to stop actually trying to cure anyone, and to make a blanket prescription of anti-depressants and exercise to everyone with a chronic illness irrespective of what is wrong with them.

It's actually revealing, because what they said is that it's patient-centered. Which doesn't really mean anything in itself, medicine is obviously centered on the patient by default, we don't mount campaigns against roaming diseases in the wild, the label is so silly. So it seems to mean something like "for our own good", despite us explicitly not wanting it to be used this way. Which is really what it's about: how it's used. One of the ways it's been used is precisely to prop up the psychosomatic ideology, by twisting patient reports as a measure of "somatization", which is 100% a judgment call on the physician, by the physician, for the physician.

Patient reports can be descriptive, they give information about what's happening, but they obviously can't be used the way they have systematically been: prescriptive, that because some people, somewhere out there, answered an inaccurate questionnaire, it must mean something about you personally. Which is obviously nonsense. It both uses the idea that every case is different and that it means that it's all the same thing underneath, 0/10 for self-consistency.

So it seems that patient-centered is just a buzzword to pretend to take the patient as a reliable witness, and then at times do the exact opposite, with zero consistence and almost entirely dependent on the person making the judgment call to interpret, say, a high pain report, as "drug-seeking", malingering, "catastrophizing", or whatever. Works just as poorly in a clinical setting as in research run by biased individuals.

The very best example is probably the catastrophizing one. Can't imagine a more perverted use of patient reports in a corrupt way. It literally uses the patient's reporting of basic facts as implying, never quite saying, delusion.

 

[rvallee]

In our conversation with @Hilda Bastian, she made it clear that the move to subjective measures involving patient reports was seen as a very good thing by consumer advocates - perhaps they even asked for them. It was seen as 'listening to the patient'. It just seemed that they did not give enough weight to the risk of bias in such outcomes if trials weren't blinded and/or there were not also objective measures.

It seems to assume that professionals would never influence those reports or use them in biased ways, that those are held in check by *checks note* very weak methodology and a broken, dysfunctional "publish or perish" system that rewards quantity over quality. It paints professionals as fully neutral and objective in everything they do. Which is stupendously naïve.