Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

Interesting @Caroline Struthers.
So instead of kicking a can down the road maybe they are trying the brush off.
But maybe that implies they are definitely not going to do the right thing.

I doubt I should do anything rash but I could always write to Catherine (whoever she is, I forget) saying something like:

Dear Catherine,
I have been made aware of the correspondence with Caroline Struthers. I think it is more than disappointing that Cochrane does not have the courage to handle this matter in a manner more consistent with its established principles.

I shall discuss with the current lead of the University College London Division of Medicine the option of hosting a Special Grand Round next season entitled:

'Remember Cochrane: what was it, in reality?'

and would be delighted to have Caroline as a guest speaker. I think it is important that major teaching units are aware that the organisation no longer appears to be able to follow its own supposed policies.

Yours...

Prof Emeritus blah blah

P.S.: My Grand Rounds are usually packed out.

 

Damn. How did such a rotten organization ever become the standard bearer of medical evidence? Because wow does it reveal a lot.

They truly don't give a single frack about their mission, it's all about personal self-advancement. Absolutely zero respect for patients or any of their stated principles. It's genuinely disturbing how corrupt and dysfunctional this place is, but more and more it just looks typical for medicine.

 

Wonderful. Catherine Spencer is the new(ish) CEO. I was thinking of publishing the whole complaint about Karla on my blog, including the correspondence with Catherine before and after I submitted the complaint. She seemed to agree the complaint should be independently investigated, and now it seems it's enough for Cochrane to "make a note". I can forward her response to the Charity Commission so they know Cochrane aren't investigating.
Great I received her email on the same day that The Cochrane Consumer Officer Richard Morley posted this https://twitter.com/user/status/1650387827413098499

 

Wow, interesting. I thought there would be more strategic dallying. Or more strategic a reply. And we'd all have to wait to see what came back. And it would be a less direct answer of 'who they are' (based on how they handle things). But then I guess the only information it confirms is 'that they are not going to tell you' what they are intending to do or when [which indicates they feel that they are entitled to that right now vis a vis whatever their intentions are].

I hesitate to suggest anything kneejerk either - so do NOT take this as an instruction, just intrigue thinking out loud. In fact, I'd certainly say there is no rush your end to act with this now that you've been given such a direct and clear reply, certainly not before having a good old mull-over of all the possibilities. The response has been so swift to provide plenty of time to think if, what and in what order re: any actions. And Cochrane have been clear they want nothing further from you re: this. The clock has started but new process their end would need to be given some time anyway so

option 1 (the obvious-seeming right now):
But it does feel like initially: now you have your reply that can/could now be sent to the Charity Commission with a pretty straightforward question: is that how any organisation should deal with complaints about anything, particularly a where she herself [in prior email] noted "we recognise the need to look at it impartially" in the previous email, which is quite a different thing to 'have been noted' without any such process? [being the question]

They even noted they don't have a process, or a timeframe what/when for this, in the same email they said 'discussion over we ain't looking at these complaints'. So ..

And I'm not sure that telling someone not to contact them again about a matter is something I'd expect either. Certainly not flagging new information that was pretty blinking serious - something involved in changing the wording on the main effect size and confidence in a report they allowed to be 'well-distributed and used'. The question is maybe whether the Charity Commission think the same, or more accurately: do they [the CC] wish all those in their sector to have the same entitlement from any queries ever, based on such a precedent?

The line 'we now consider the matter closed' basically feels like such a 'go signal' for the press send that it feels like a trap right now without a bit of musing. Given it is so short and sweet it might as well be accompanied by the FOI pack of the emails, her initial reply and this. I guess it is optional whether you include the 'hit reply instead of send' one to 'bulk it out for them' tho that one does cut to the matter nicely.


But then to think laterally (which it is always useful to take a pause to do so when you think you might've been handed a 'shiny keys' situation) e.g. maybe it also works v well from a court of public opinion perspective instead, or just via doing that first. And maybe there are other things that are smart that just need time to inspire up as good next move.

It certainly flags up the contrast with Nice's process on the same subject matter - and striving for process and appropriate independence as stand-out by comparison. A flow-chart of the 2 side-by-side almost in my mind on a powerpoint slide.

Or... there probably is a nuanced, serious article [or more] to be had here about the 'who are we as a sector'. I don't know whether there are individuals like David Black who might dissect the process and implications of this 'short but clear in implications' back-and-forth, and the good news is the brevity of reply, and the focusedness [and obvious issue] of the initial complaint means all the material could fit into the one article making it a self-contained little number on 'is this how we deal with the issue of ....'.

I don't know enough for sure (other than situations I've seen in newspapers over the years) to know whether these, or other ideas, might seem to increase or decrease the chances of the CC spotting the issue at hand. I guess the question of 'public interest' can be answered one way or the other in theory, but others might know whether 'in specific' for the CC and things like this if there is a 'specific' they have in mind etc.


Either way, I guess that in theory one day, They [the CC] can note the difference in length and number of communications between when they [Cochrane] are 'email happy' as they want an independent to change something vis a vis less email happy when someone asks for something they've flagged to be investigated using proper process.

And the point rather is: if the change they [Karla in the end with rep for 'the authors'] made during that email exchange was apparently unimportant enough to warrant being able to looked into by any process not involving the person the complaint was about as the decision-maker, then why did they make it happen over what was a very protracted [if you include the data team and previous post-holder emails] exchange, and why have they not simply rectified it?

 

Catherine refers to their Head of Governance "revisiting" all their policies and procedures - what fun that will be. But no one seems to have visited them before... Maybe she can send a postcard. They have only had a Head of Governance since March this year. https://www.linkedin.com/in/lucy-johnson-brown

 

A carefully-chosen word there isn't it 'revisiting' vs any other possible alternatives that might have certain meaning/outcomes attached to them.

And yes intriguing to track back the timing of decision to hire a head of governance (a year start-to-'in post' seems reasonable estimate) with clout, which this seems potentially to be.

 

Can they at least give an explanation as to why it's okay to write a review with a clinically unimportant "non-zero" effect as the effect of interest, and then not tell anyone that's what you've done? (besides a footnote that doesn't clarify anything at all)

They're not even going to give an impression of allowing any kind of recourse in regards to this? This is disappointing.

 

just incase there are people who can't see the replies

https://twitter.com/user/status/1650536587418120193

 

'exercise chronic fatigue syndrome' search this comes up:

https://www.cochrane.org/search/site/exercise chronic fatigue syndrome

eta: no warning, or advice that the review is 'under review'.

 

The about turn is just plain weird. The only rational explanation I can think of is that someone at Cochrane ran the issue past their legal advisers and were told to shut it down. I don't think this point should be lost, it is not reasonable behaviour. You were clearly offered a reasonable process of investigation and that has been withdrawn without any explanation.

If you wanted to pursue this, the next logical 'escalation' would be to the Trustees: https://www.cochrane.org/about-us/governance-and-management

Complaints Resolution Procedure

This Procedure covers complaints about:

The standard of service provided by, or conduct/behaviour of, Cochrane members or supporters in their Cochrane activities;
Any action, or lack of action, by Cochrane members or supporters in their Cochrane activities.

It does not cover:

Complaints that are more appropriately addressed by another process (e.g. employer processes, legal processes, and editorial matters) or an external agency such as the Police. This includes:
Comments - including disagreements - on the content of a Cochrane Review or Protocol, which are dealt with via the Comments Section of Cochrane Reviews in The Cochrane Library.
Referrals to the COI Panel on potential contraventions of Cochrane’s Conflict of Interest policies related to the funding of Cochrane Reviews.
Complaints made about, or by, staff of Cochrane’s Central Executive Team (who are also Cochrane Members as a benefit of their employment), which are dealt with according to the Central Executive Team’s employment procedures1.
Complaints about Cochrane members or supporters which do not relate to their Cochrane activities (e.g. non-Cochrane work undertaken as part of their normal employment).
Matters that have already been through the Complaints Resolution Procedure set out in this document.
Anonymous complaints.
Complaints about access to information where procedures and remedies are set out in legislation, e.g. EU General Data Protection Regulation.
Complaints alleging behaviour of a criminal or unlawful nature.[/QUOTE][/QUOTE]

Edit: to remove contentious phrase.

 

A week has gone by and no response from either email address.

 

As Catherine only shut down two of my three complaints - she helpfully labelled them a and b - I wrote to ask about the other one, which I labelled c.

Dear Catherine

Are you still considering:

c) Complaint regarding poor management of Cochrane’s “Stakeholder engagement in high-profile reviews pilot” dated 15 March 2023 (attached)?

Best wishes

Caroline

 

Have also written to the Charity Commission to let them know that Cochrane is not investigating my allegation of harm to beneficiaries caused by one of its staff as there is no procedure in place to do so.

 

crikey, well done @Caroline Struthers thank you for all the work you've put in. Disgraceful response but par for the course from Cochrane it seems.

They have just turned into a complete joke. I do wish health professionals around the world could see the reality

 

What a joke organization. They talk about listening, but never actually listen. It's all empty political slogans, hollow words that promote the idea of an organization that has nothing to do with what Cochrane actually is.

Strongly reminds of populist politics, using voters as props on a stage while doing everything to screw them over in secret behind closed doors.

 

Gonna have to find who polices the police first. Then maybe who polices the police who polices the police.

Then eventually the turtle in charge, or something.