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.

 

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.

 

what's this a reference to?

 

and this?

 

Well, that might be a bit political and a bit transatlantic for me to say more.
Although, I may have been exaggerating, judging by the filibuster this week.

 

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.