Concerns about Cochrane

Peter Gøtzsche is crowdfunding to cover legal costs and to support a new Institute for Scientific Freedom

GoFundME: Scientific freedom

Peter R. Breggin MD and Ginger Breggin, International Center for the Study of Patient-Oriented Psychiatry write: “Peter Gøtzsche MD is a hero of science and medicine, one of the brave few in history to stand up for scientific truth and freedom rather than for professional and industrial interests. If the Pharmaceutical Empire and professional avarice can stop this honorable man’s work, it will intimidate physicians and scientists throughout the world, greatly setting back genuine scientific inquiry and reform in research and in services. Contributing to Peter Gøtzsche’s lifetime work at this moment in time is a contribution to the future of medical and scientific freedom. They have billions of dollars, but we have Peter Gøtzsche and other brave reformers—and we have right on our side. Contributing to Dr. Gøtzsche’s fund is something you can be proud of, knowing that it will bring positive results for humankind!”
 
For our case, it's a bit of luck that these two situations are unraveling at the same time. ME and the GET-paper are probabaly not high profile enough to get Cochrane to step up their COI-game etc. But the GET-paper bubbling to the surface at the same time as this HPV-situation are starting to look not so very good for Cochrane - can't blame it on independent incidences anymore, when strong similarities in fails from such different fields.
 
inox said:
For our case, it's a bit of luck that these two situations are unraveling at the same time. ME and the GET-paper are probabaly not high profile enough to get Cochrane to step up their COI-game etc. But the GET-paper bubbling to the surface at the same time as this HPV-situation are starting to look not so very good for Cochrane - can't blame it on independent incidences anymore, when strong similarities in fails from such different fields.
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It's a bit annoying to never hear of the GET review in this controversy since it mirrors a lot of the issues with the HPV review. The problems are even more egregious on some of the points raised. If the concerns were over process, this point should have already been made. It's hard to overcome prejudice and have people care about the undeserving sick...
 
That's really good, on the history, intentions, development and todays differing views on the way foreward.

One thing that surprised me a bit, it have been long known there are major problems with a big part of their reviews. And yet they managed to be seen as a sort of "gold standard of the gold standard".....?

Cochrane’s methods drove a collective, international, move towards evidence based decision making. That is not to say its work was infallible.

A 1998 assessment of 53 reviews found “major problems” in 29%, with all the problematic conclusions giving too favourable a picture of the experimental intervention.
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inox said:
One thing that surprised me a bit, it have been long known there are major problems with a big part of their reviews. And yet they managed to be seen as a sort of "gold standard of the gold standard".....?
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That is an interesting quote from 1998. Especially that all problematic conclusions were too favourable. That indicates that something like publication bias affects these reviews - the people who do these reviews are too often enthusiasts for treatments.
 
Jonathan Edwards said:
That is an interesting quote from 1998. Especially that all problematic conclusions were too favourable. That indicates that something like publication bias affects these reviews - the people who do these reviews are too often enthusiasts for treatments.
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It is, and I think it's even stronger within the context of the article, as it goes on to talk about conflict of interests, funding by drug companies etc. It reads as implied that (economic) interests have used Cochrane to strengthen their posistion.

Not until 2003 did funding of Cochrane reviews or review groups by “commercial sources with financial interests in the conclusions” get banned.

However, no consensus was reached on funding of Cochrane centres, and employees of manufacturers of drugs or medical devices were still allowed to write and propose reviews.
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It took a while to read the whole thing, but it's a really well written and interesting piece - lots of quotes from people on both sides, and gives an insight into some tug wars and internal affairs of Cochrane.

Caroline Struthers are doing a lot to help pointing out the faulty reviews on ME, this quote is more general, but thought it could be of interest.

Caroline Struthers is a 2018 Cochrane award winner and a trainer with the Equator Network, an international initiative aimed at improving research quality. Having once enthused, “My aim in life is to help make the Cochrane Collaboration the household name it deserves to be,”37 she became one of many longstanding members to publicise their disillusionment.

Cochrane places “way too much emphasis on ever more sophisticated review methods and the shoehorning of dodgy data into meta-analyses,” she tells The BMJ.
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Cochrane members for change
The first 100 days, a personal account - Jos Verbeek

It is difficult to say what if anything is different now. Thanks to the support of many Cochrane members, it seems that business will not be continued as usual. That is an achievement.

Also many people did not like what we did and I found that they were very intimidating. I extensively cited their emails to illustrate what happens when you ask for discussion and debate in Cochrane. The four issues statement was formulated as a point of departure for discussion not as demands that we wanted to be realised immediately. Even that was too much already and considered destructive by some.

Will things really change? Will there be real member engagement? That would mean that members really get a say in Cochrane policy. For example, that we have real Annual General Meetings where we can discuss and then vote about policies or that we would elect the new Editor in Chief from a number of possible candidates or that we would have lively debates about controversial reviews or methods. Well, it hasn’t even been possible to organise a discussion platform, so it might be that this all will still take years before it is realised. Nevertheless, it feels like a big step to have opened the discussion and it will be very difficult to get the genie back into the bottle. So, there will be more to come in the near future.
 
Kalliope said:
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Does anyone know how Cochrane's CFS reviews fit into that chronology?

Were things like Larun's published exercise review and the IPD protocol a part of the central executive having more control? A part of an incompetent attempt to raise standards and produce reviews of real interest to patients?

I guess that it might be impossible for us to know without more info from Cochrane.

It's a bit annoying that there was no mention of the problems with their CFS work in the BMJ piece.

"There was challenge at that time from some of the people who are shouting now,” Wilson says. Shortly after he arrived, he recalls, a video was sent around comparing the then Cochrane leadership to “Hitler and his high command.”
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Why didn't that lead to years of media coverage presenting people who had nothing to do with the video as anti-science militants?
 
Kalliope said:


Cochrane members for change
The first 100 days, a personal account - Jos Verbeek
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I am in no doubt that our activities led to the very high voter turn-out of more than 1200 voters.
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It looks like now anyone can join Cochrane, so patients wanting to try to improve the quality of their work can contribute and vote in any future elections:

https://community.cochrane.org/organizational-info/resources/support-cet/membership

https://www.cochrane.org/join-cochrane

This is something we probably should have been aware of before the last election.

This Cochrane stuff is so complicated that I'm sure we're missing loads of oportunities to make things better.
 
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Esther12 said:
Cochrane EIC David Tovey has written a response to the recent BMJ piece: https://www.bmj.com/content/364/bmj.k5302/rr-7

I struggle to judge some of this stuff.
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Feel free to ignore the evidence of sustained income growth that Newman cites
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Citing income growth as first evidence of success is a very weak argument when it has nothing to do with the core mission.

Over time, institutions adapt to become about preserving themselves and their leadership, even at the expense of their core mission. Great example. "We're rolling in cash" couldn't better exemplify "having lost their way" any clearer.
 
We should have a whip round and buy a dozen to send to our " favourite"
journalists and doctors!
 
Kalliope said:
Peter Gøtzsche has now published a book:
Death of a whistleblower and Cochrane's moral collapse
Amazon product ASIN B07N927GXC
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If he wants to get the word out I think he should consider reducing the price of this ebook (not available in paper, though it easily could be) from £22. Ebooks have zero production costs - it seems odd to price this so high when it's essentially a campaigning book.
 
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