My previous post “My question to the Governing Board of Cochrane” got an answer on Friday. Here I’ve reposted my original question, their original answer, and my comments on that answer. And below that is the answer Margeurite Koster emailed on Friday 16th November. Still not answering my question, or explaining why asking for missing information from a trial when you’re not conducting a review is a breach of the Cochrane Spokesperson Policy. To my horror, I now realise I have also breached the Spokesperson Policy. In 2012 I wrote to a researcher asking him to publish the results of his trial which had been posted on a trials register and completed in 2009. I wasn’t doing a systematic review – uh-oh! It was part of an public engagement project I was managing aimed at patients, carers and members of the public, including schoolchildren to get them interested and involved in the important work Cochrane does, and to educate them about the huge problem of publication bias. This researcher assured me that the results would be published, but they still haven’t been, and they have not been posted on the trial register either. Luckily for me this researcher didn’t write and complain to Mark Wilson otherwise I would be in serious trouble.
My original question
Please can you explain why writing to a funder to ask for missing data from a trial using Cochrane letterhead is violating the Cochrane spokesperson policy? Surely that is what all Cochrane authors regularly have to do in order to avoid the reporting bias which blights most Cochrane Reviews. Surely this action is something to be rewarded and encouraged.
Governing board answer: part 1
It is important that when anybody within a Cochrane group writes to anybody, about anything, it should be made clear in what capacity they are writing.
My response
Cochrane’s mission is to produce documents which synthesize evidence on the benefits and harms of treatments. Surely someone from Cochrane or anywhere else asking for clarification about information which should have been reported clearly in an open access publication but wasn’t is undertaking a fundamental part of Cochrane’s work.
What if this funder had, as he should have done, written back to Professor Gøtzsche apologising for the lack of clarity in the published articles relating to the trial, and given him the information he asked for? What if Professor Gøtzsche were then able to include this information in a systematic review which showed significant harms from the drug and led to it being withdrawn as a treatment option in favour of a less harmful drug? What if Professor Gøtzsche were able to include this information in a systematic review which showed that the benefits of the drug outweighed the harms? It could have gone either way, but perhaps the person who complained about Professor Gøtzsche’s letter was more worried that it would show the drug in a negative light. You seem more concerned that Professor Gøtzsche be seen in a negative light than a person refusing to publish data from their trial.
Governing Board answer: part 2
This is particularly important if the person writing has roles both inside and outside Cochrane. If they are writing in a personal or professional capacity, about something that is not related to the official work of the Cochrane group, they must be careful not to confuse the recipient of the letter. Confusion may be engendered by using a Cochrane letterhead, e-mail or designation, when it would be more appropriate to use an alternative.
My response
I repeat, why is asking for information about the number of deaths in a trial not related to the official work of Cochrane? Should he have said he was conducting a Cochrane review about the drug? Would that have made it OK?
Governing Board answer: part 3
Professor Gøtzsche had a longstanding record of refusing to abide by Cochrane’s policy and pledges he had made in this regard; he refused to follow the guidance he was offered; and he rejected the responsibility he was repeatedly asked to bear in mind.
My response
What policy are you referring to here? Please be more specific. What guidance was he offered? Please be more specific. Guidance is guidance, not law. What responsibility? To Cochrane, or to patients? I think he chose patients over Cochrane. I think Cochrane chooses to protect the reputation of Cochrane over its mission to protect patients and the public. For example the unforgivable lapse over the publication of the Exercise for CFS review. It’s great Cochrane has finally decided to withdraw it, but it should never have been published in the first place. The harm done both by letting a methodologically sub-standard review get published, and thereby allowing the PACE triallists to use Cochrane’s name and reputation to sanctify an appallingly conducted and biased trial is sickening.
Response to my comments from Margeurite Koster 16 November 2018
Dear Ms. Struthers,
My apologies for the delay in responding to your question regarding the Spokesperson Policy, but the Board has been involved in planning for the upcoming elections and responding to questions and inquiries from a number of groups over the last several weeks.
Cochrane is an international collaboration involving thousands of people with multiple affiliations to different organizations. Cochrane’s Spokesperson Policy establishes guidance about who can speak officially on behalf of Cochrane and the circumstances in which it is appropriate to do so. This is so that people understand whether a request or statement is coming from Cochrane – the global organization – or simply from people who are members of Cochrane working on Cochrane activities.
It is important to make clear that a Cochrane author team can use their Cochrane affiliation to request data that is intended for use in a Cochrane systematic review they are working on – this is an important part of their ‘Cochrane work’. In making such as request, they would identify themselves as authors of an in-progress Cochrane review for a specific review group, and clarify that the request for data is being made in the interest of using the data for that specific review. This situation is common among Cochrane authors and is not a breach of the Spokesperson Policy.
Based on feedback we have received from Cochrane members, the Governing Board has recognised that some clarifications and more support are required, in order to help Cochrane members interpret the Spokesperson Policy properly. The Central Executive Team, in consultation with various Cochrane groups, will be working on this in the coming months.
Best regards,
Marguerite
Marguerite A. Koster
Co-Chair
Cochrane Governing Board