Blog: "The patient voice: a biased or valuable source of information?"

I don't mind if it said that patients are biased, if there is also a recognition that doctors and the medical system and research and politics are also biased. Assuming that only patients are biased is, ironically, the very problem that is being pointed at.
 
petrichor said:
This piece is sufficiently vague and fluffy that it acts as a bit of a rorschach test for what people want to get annoyed about. Although that doesn't necessarily make it totally bad.

This sort of vague philosophical-type thinking seems to be pretty popular amongst some medical professionals. And I never really get the impression they're that good at it - a lot of assertions without proper evidence, muddling similar but different concepts together. Basically just talking vaguely and broadly about concepts in a way that seems clever at a distance, but if you look closer is confused and lacking in substance. There does seem to be a lot of that sort of thinking amongst BPS type theories and thinking about things like functional and somatization disorders.

Anyway so I struggle to see the exact point this piece is making. Maybe he's just saying people should have more empathy for patients and listen to them more? Or maybe it's an argument for N=1 trials becoming the gold standard? There's really a lot of room for interpretation, although I think it's more likely to be the former.

I feel like people are being a bit harsh on this guy for writing a pretty benign piece though. Some things he wrote in a paper he authored do seem to indicate he holds a fairly BPS view of disease but I don't know if that's worth discussing.
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Honestly at this point it's pretty much clear that most papers that don't explicitly deal with basic research are basically just publishing papers for the sake of publishing papers because that's what academics do, even when they have done no work warranting it. The substance is of no relevance or interest, I even doubt anyone but the authors read them, including the editors and reviewers.

Turns out it's not a conflict between publish or perish, by making academia an endless churn of low-quality junk, it puts the premise of the entire system in peril, it's perish by publishing at all costs. At this point it's 90%+ useless junk, busywork of no purpose simply because writing papers is what academics do, not for any particular reason or intent, simply because it's how budgets are determined.
 
dave30th said:
what's this a reference to?
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Not sure if I'm helping but check out @Caroline Struthers posts on the response she received from NICE. This is my memory and it's seems a little surreal. NICE appoints a panel e.g. to review the ME/CFS guidelines; I assume this "expert" group produces the draft guidelines and these are then scrutinised and formally adopted as the new guidelines - so far the process looks OK.

NICE employs a separate entity [name?] to produce some sort of dumbed down version of the guidelines - I guess the concept is user friendly after all we can't expect the user (GP) to use the guidelines! The surreal bit is the dumbed down version doesn't have to align/reflect the NICE guidelines; also, NICE claims that they are not responsible where the dumbed down version doesn't reflect the guidelines!

The risk is that the psychological approach (unsupported by evidence) and the exercise bit (unsupported by evidence) remerge via these dumbed down/inaccurate documents.
 
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