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

I have registered as a consumer.

I was surprised, but pleased that they actually asked my question in the Q & A at the end of the session: "Better health decisions. Using Cochrane evidence in shared decision-making."

"So this one is really interesting. It's from Debbie Smith, thank you for your question. It's saying, how do you alert people to systematic reviews, that give outdated information and recommendations? So so far we have had lots of positive examples of information to support shared decision making. But what if it isn't there in terms of the actual essence of the evidence itself? Because we cannot spin out of that, or can we? So that's the question I think.

So I knew Tracy would put her hand up! If you want to take on that one Tracey,. TRACEY: Thanks very much for your question and I agree that we don't get everything right. And that's part of everything but I guess it's part of admitting when we're wrong. I think one of the big criticisms of Cochrane is that it takes forever to get information out and for reviews to be produced. We're addressing that as you can see from our response to the COVID pandemic we produced information very rapidly, high quality evidence that has been utilised in decision making and policy making around the world and so we can do it. It is a bit more resource-intensive and the governing board are very much in favour of looking at how we can streamline our processes to make that evidence available more quickly to get to the right people at the right time. So I can assure you on behalf of the governing board we are working on this. But as you know things take a bit of time to alter. However, we did respond fantastically well and I would like to congratulate all the teams and people involved with that. They've done a fantastic job. So we would like to take that learn and move it across the organisation. I hope that answers your question."

Tracey=Tracy Howe, who was appointed as Co-chair of the Governing Board in Sep 2020.

Obviously this a "holding" response, but hopefully our specific concerns can be followed up with her and the Governing Board.

"Professor Howe is Director of the Cochrane-Campbell Global Ageing Partnership and is based in Glasgow, UK. She was elected as a Governing Board member (Trustee) in July 2017, served as Treasurer from October 2018 to March 2019, and is a member of the Board’s Governance, and Finance Audit & Investment Committees." https://www.cochrane.org/news/new-appointments-cochranes-governing-board (Not sure why copied link is not working)

 

Tracey Howe didn't answer your question at all. Not even close. And then she moved straight onto saying how well Cochrane had responded to COVID.

 

That's a politician's non-response. Even takes the opportunity to congratulate themselves for taking too long to do anything or fail to address concerns because... reasons. Basically it looks like the organization has no oversight or accountability process so if it happens it happens and if it doesn't well that's still good because... ?

Which sounds expected given the voluntary nature of most of the work and how it encourages researchers to use it for self-promotion and bunker down whenever their self-promotion is challenged, because then the (free) work would be all for nothing. Nobody likes to have their work canceled, especially if that work leads to more work and better reputational status.

It did not, in any way, answer the question. It was a specific question and a good one. In no way was anything in that response addressing how to go around this clear systemic failure for which no process exists to address. Explicitly so by the addition of a veto power granted to some reviewers (let's not kid ourselves that this veto is not respected if issues arise with other "respectable" topics).

About as good as I expected. The bigger question is how such an organization ever got the kind of influence it enjoys. I truly do not get it, it is completely detached from reality, full-on ivory tower status, especially because those who make the decisions seem to never actually even know about the outcomes they create.

 

I notice Hilda refers to “we”. I don’t know if that means she’s recruited anyone to the IAG yet or if she’s just referring to herself and other Cochrane people. No doubt we will find out in the fullness of time.

Edit: sorry crossed with Andy. Leaving it here for comment above.

 

I am fairly certain it will be she and other Cochrane people- Rachel Marshall (a senior Editor) and Richard Morley (the consumer engagement officer). We shall see.

 

Anyone feel engaged? Or perhaps we just aren't the right kind of 'consumer'.

 

I chased COPE yesterday about my case against The Cochrane Library (which is officially a journal). I submitted the case over a month ago. I imagine they will find a way to decide it's "out of scope" like the the HRA did about PACE.

Thank you for your email. The member of the Facilitation and Integrity subcommittee has looked over the information available on this case and is reviewing this in the context of the scope of the Facilitation and Integrity process. I expect to receive advice soon from the subcommittee member regarding next steps, and hope that we will be able to pursue next steps in the next week or two; if we pursue a contact with the journal, we will copy you in that correspondence.

With best wishes,

XXX
Committee on Publication Ethics (COPE)
www.publicationethics.org

 

Nice that they sent you kisses!

 

I have realised that although now registered, I can't actually attend the session at #VirtuallyCochrane (https://uk.cochrane.org/our-work/upcoming-event-virtually-cochrane-2021/virtually-cochrane-programme) this afternoon called "Cochrane’s Plain Language Summary Project: what have we learnt so far?" However, I have posted a question anyway - anonymously. I wonder if they will attempt to answer it....

Plain language summaries can be accessed directly via Cochrane.org. If an editorial note is posted on the main text saying, for example, that a review is out of date and should not be used for decision making, this is not visible in the plain language summary. Users will not see it unless they click through to the full text, which defeats the object of the plain language summary. Can the team comment on how Cochrane will address this issue?

 

Hi @Caroline Struthers, I was going to attend the "Right question, right methods, right now" session, but will switch to the plain language summary one instead and vote up your question.
It is very easy (and free for consumers, ie us) to register. These sessions start at 15.45 today. There is also a session entitled "Collaborations, NICEly done at 11am tomorrow, where I will be submitting a question....

 

YEs, I only just noticed the NICE session - I will be able to go to that one too! Will upvote your question for sure

 

I wonder where I can include this as a question in the Virtually Cochrane conference?

 

For the record, on Twitter, Hilda has committed to publishing of the progress report before the new NICE guidelines is published in August.

Question, "Will this be released before the NICE Guidelines are published in August?"

Answer, "If you mean the progress report, yes."

 

A process that began 5 years ago with the same facts and consequences at play, admitted to be indefensible. And yet here we are. As things go LC is more likely to influence this, because I assume there will be more politicking out the other way until anything actually happens.

Is this the normal process or are we just exempted from it and getting the junk treatment? Because if this is the normal process...

 

got it! thanks.

 

@Caroline Struthers question was asked
"Plain Language Summaries can be accessed directly via the organisational website, Cochrane.org, if an editorial is posted on the main text to say a review is out of date or not used for decision-making, it is not visible in the PLS, users don't see it until clicking through to the full text, which defeats the object of the PLS, can you comment on addressing this issue?
ELIZABETH: I shall take this, it is, I'm afraid, it is somebody else's job, we don't publish the PLSs or put them on to Cochrane.org. I'm not sure how we would do it. But it is something to take on board to take on the inquiry to take it to the right person and some sort of action should be taken. I'm afraid that I can't say who it is or what will be the action at the moment.
JO: That is a very good point and this will inform our future work."

Elizabeth = E Royle
Elizabeth manages the copy-editing of Cochrane Reviews and Protocols, including managing a team of freelance copy-editors, and ensuring a timely and high-quality copy-editing service for CRGs. Elizabeth also develops the Cochrane Style Manual, provides advice on other copy-editing activities, and takes part in related strategic initiatives.

Jo Anthony
Head of Knowledge Translation, Cochrane
Jo leads the coordination, facilitation and support to Cochrane’s organizational implementation of its Knowledge Translation (KT) Framework and Strategy, which seeks to maximize the dissemination, use and impact of Cochrane evidence. Jo has extensive experience as a professionally trained journalist, senior executive and communications specialist within media organizations in the UK. Her focus is to work with KT Advisors, Cochrane Groups, authors and editorial team to disseminate, build profile and increase the coverage and accessibility of Cochrane’s evidence into practice across wide audiences. Her interests include developing and implementing dissemination plans, media campaigns and communications strategies that engage, inform and interest global and diverse audiences. Jo’s academic qualifications include a Bachelor of Arts (Hons) and a Postgraduate Diploma in Broadcast Journalism, (NCTBJ), City University, London, UK. She has more than 20 years’ experience in print and broadcast journalism including senior leadership positions within the BBC, commercial radio, TV, and digital content production.

Usefully, you can click on a speech to text function for these sessions.