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

It hosts and funds Cochrane Norway

 

Guessing folks in Norway are challenging this.

 

Have finally got round to starting work on the complaint to Cochrane about the Editor in Chief ignoring the advice of arbitrator Gordon Guyatt. He said allowing the exercise review authors to continue to rate the quality of evidence on one outcome (fatigue) as moderate was contingent on highlighting the lack of important effect. I want assurance from the new CEO (Catherine Spencer) that the complaint will be investigated properly, so I wrote to her yesterday (3 January 2023) as follows


Dear Catherine

I am writing in a personal capacity and not as a representative of my employer.

I wish to make a complaint about Dr Karla Soares-Weiser, Editor in Chief of the Cochrane Library. Your procedure stipulates that the complaint should be directed to you. In the past I have complained both to and about the Editor-in-Chief, including the previous incumbent, Dr David Tovey.

In a quest for an independent investigation I have (I think) twice appealed to a committee called the Cochrane Library Oversight Committee. When it was formed in around 2014 it seemed to be the ideal way for complaints about the Editor in Chief to be dealt with independently. Now the Editor in Chief has been made a member of that committee so the independence is gone. https://community.cochrane.org/organizational-info/people/cochrane-library-oversight-committee. I would be interested to know what if any issues have ever been resolved by this committee. I don’t understand why minutes from their meetings are not made available. Please could you chase up my question about its membership which still does not include “at least one health consumer advocate” despite assurances that this was being addressed (see attached email correspondence. I have not had any response since May 2021 despite polite chasing)

Please can you let me know how a complaint about the Editor in Chief will be investigated independently? I need more information than “Cochrane will be guided by COPE's core practices and guidelines when handling complaints”. Please point me to the exact COPE practice guidelines you will follow when you investigate my complaint. I think it would be a good idea to develop this more explicitly and post it on the complaints page to aid people wishing to raise concerns https://www.cochranelibrary.com/help/complaints. The HRA seem to have a reasonably good procedure in place https://www.hra.nhs.uk/about-us/gov...concerns/hra-complaints-policy-and-procedure/

As advised on your complaint page, I have also appealed to COPE on a related but separate complaint which was not handled independently and it seems COPE ensure journals have followed their own procedures and investigating editorial misconduct is beyond their remit.

Once I have assurance the complaint will be investigated independently and how it will be conducted, I will submit it to you.

With best wishes


Caroline

 

thank you for your tenacity Caroline.

 

Thank you very much Caroline - I assume you've posted it on social media --- sure Cochrane wouldn't want it all over social media --- so hopefully it will be!
Person I worked with, who had worked in the Minister's private office, said they monitored social media and responded --- not sure Cochrane will but having it out there should add a little more visibility!

 

I haven't put the letter to Catherine Spencer up, but I probably will tomorrow

 

Is it worth copying any of this to Professor Ken Stein at NIHR. "Director of the NIHR Evidence Synthesis Programme"

(He was critical of Cochrane's value in his talk at the 2021 "Virtually Cochrane Conference" https://uk.cochrane.org/cochrane-and-nihr)

 

I think he has probably moved on, now Cochrane in the UK has been defunded. As of end of March this year, all the Cochrane review groups in the UK will cease to exist. Not sure what's happening in the rest of the world. And I think that the NIHR are planning to create their own Evidence Synthesis Units. This outlines Cochrane's new strategy https://community.cochrane.org/organizational-info/plans/future-evidence-synthesis-cochrane

 

My initial reaction is concern i.e. if the follow Cochrane's example ----

 

They do say they will be working with NIHR which is slightly worrying...I will have to dig out where I read that

 

I may copy in Gillian Leng, ex CEO of NICE, who I have written to about Cochrane and their misconduct in relation to this review and the fact Cochrane won't withdraw it even though it is being used by prominent Cochranites (eg. Paul Garner) to criticize NICE's own processes and procedures. She is now on the governing board of Cochrane! (https://www.cochrane.org/news/cochr...s-embedding-evidence-and-governance-expertise) This was a bit of a surprise to me when I found out (yesterday). But at least she can't pretend to be unaware of the long-standing concerns over this review, particularly as it relates to the new NICE guidelines.

 

Wonder if NIHR are planning to recruit people --- I think the example of Jonathan being part of the research review, initiated by Sajid Javid, is a good example of how to reassure the ME/CFS community ---- perhaps there would be a opportunity for someone like you (AKA you) to be part of the NIHR initiative ---- something [EDIT - for the ME/CFS community] to ask for?

 

I am planning to put in a bid for NIHR funding for a project to develop a systematic way to involve patients and the public in developing trial plans (aka "protocols").

The inspiration (for me) was the revelation that systematic reviews, even "trusted" Cochrane ones, gloss over the fact that most of data from historical trials are useless, because trials have been designed and conducted badly. This can either be done on purpose because of bias favoring particular treatments as in PACE, or through inexperience and/or incompetence of the researchers.

I propose to explore a way to involve patients, carers and the public in the scrutiny of previous trials on treatments for patient populations of interest to them, to identify firstly if there are any trials which are both relevant and well designed/conducted/reported. If there are few or none - usually the case as we know from the NICE review for the ME/CFS guideline - I want to explore a way to involve patients/carers/citizens in the production of detailed plans for future trials which explicitly avoid the mistakes of the past. Once generated, these blueprints could be made available to funders "pre-approved", so to speak, as projects worthy of funding, and funders could put them out to tender.

If anyone on here would like to help me develop the proposal, that would be amazing. Please contact me directly.

 

This is an excellent idea!

 

I second Keela's comment. Really excellent idea @Caroline Struthers. Hope you get strong support - and funding - for this project.

 

Thanks. I will draft a more detailed outline of the idea as soon as I can and would welcome comments on it, probably by starting a new thread. Would that be within the forum rules and/or appropriate do you think?

 

I’d also suggest tagging or messaging a few people to make sure they see it.

 

@Caroline Struthers
might be of interest
https://www.ninds.nih.gov/about-nin...l/nandsc-mecfs-research-roadmap-working-group

EDIT - hadn't checked before I posted - there's a thread here - https://www.s4me.info/threads/usa-nih-national-institutes-of-health-news.18724/page-8#post-455197