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Cochrane Sweden wrongly suspended from social media platform X
Last week, a report co-authored by Cochrane Sweden revealed that the results of hundreds of Nordic clinical trials remain unpublished. The team shared the report on the social media platform X, formerly known as Twitter. Two days later, their account was suspended from the platform following reports from unknown users. The team are appealing the decision but have had no response so far.
Since 2019, Cochrane Sweden have been involved in improving trial transparency, publishing reports and organizing international webinars. The latest report found that 475 clinical trials involving 83,903 patients completed during 2016-19 in Denmark, Iceland, Finland, Norway and Sweden have never made their results public in any form.
“We shared the report on Nordic trial transparency on Tuesday 6 February, and by Thursday our Cochrane Sweden X account was suspended unexpectedly,” says Matteo Bruschettini, Director of Cochrane Sweden and co-author of the report. “We have initiated an appeal against the suspension, which is apparently for ‘pretending to be another entity in a misleading or deceptive manner’. We suspect that we were reported maliciously in response to our latest report, which is extremely unfortunate. We are currently considering whether to dismiss X and focus on other social media channels.”
X’s rules on ‘platform integrity and authenticity’ state that accounts will be suspended if they are ‘engaged in impersonation or are using a deceptive identity’. This is clearly not the case for Cochrane Sweden’s X account, which has always been run by Cochrane Sweden.
This is not the first time that Cochrane-affiliated social media channels have been erroneously censored by social media platforms. During the COVID-19 pandemic, Cochrane social media posts sharing evidence that ivermectin and hydroxychloroquine were ineffective treatments were removed from various social media platforms and wrongly tagged as ‘misinformation’.
“It’s disturbing to see that social media rules aimed at preventing misinformation are being used to do the exact opposite,” says Catherine Spencer, Chief Executive of the Cochrane Collaboration. “Social media platforms must do more to protect trusted sources from vexatious or malicious reports, and act swiftly to correct things when they make a mistake. Cochrane Sweden’s important work to promote research integrity has been undermined by rules ostensibly aimed at safeguarding integrity and authenticity. We stand behind Cochrane Sweden and urge X to restore their account as soon as possible.”
Cochrane launches new Interactive Learning module on qualitative evidence synthesis
This introductory module teaches participants how to systematically combine and analyze evidence from individual qualitative studies. The module, designed to be completed in about 90 minutes, aims to provide participants with a solid foundation in framing a QES question, scoping a topic, assessing available evidence, synthesizing data, and proficiently presenting findings in a comprehensive report.
Professor Jane Noyes, one of the module's authors, says "This module aims to provide learners with a basic overview of designing and conducting a QES. We prioritized the key methods and stages in the design and conduct of a qualitative evidence synthesis."
QES has emerged as a crucial approach for informing guideline development and addressing implementation considerations in diverse country settings and complex health systems.
"We're dedicated to meeting the needs of our end-users by diversifying the evidence we offer in the Cochrane Library. Embracing qualitative evidence synthesis strengthens our capacity to fulfill these needs. I'm thankful for the dedication of the Methods QES Group, whose efforts-from the groundbreaking Cochrane Interactive Learning to the influential Cochrane-Campbell Handbook-advance the dissemination of qualitative evidence synthesis, fostering a future where every voice is valued," Karla Soares-Weiser, Editor in Chief of the Cochrane Library, says.
Developed by the Cochrane Qualitative and Implementation Methods Group in collaboration with the Learning Team in Cochrane's Development Directorate, the twelfth module reflects dedication to delivering high-quality, engaging, and innovative distance learning experiences.
The module includes links to relevant chapters from the Cochrane-Campbell Handbook for Qualitative Evidence Synthesis, allowing learners to access more detailed methods guidance for those seeking in-depth information.
Andrew Booth, who also authored the module, shares his excitement: "Having spent over a decade delivering face-to-face training events on qualitative evidence synthesis, it was really exciting to be steered towards explaining the same concepts and techniques for an international online community."
Notably, certain Cochrane contributors and residents of HINARI countries may access the new module and the entire Cochrane Interactive Learning course free of charge. Additionally, subscription options are available for both individuals and institutions interested in accessing this valuable resource. For further details and to access the new module, please visit the Cochrane Interactive Learning page.
May Silveira Bianchim, a Cochrane Qualitative and Implementation Methods Group (QIMG) intern, underscores the value of the introductory module in her professional development: "As a Cochrane QMIG intern, the introductory module is an invaluable resource for learning the basic steps of qualitative evidence synthesis, providing insights that are instrumental in applying this knowledge to practice. This experience has been meaningful to my ongoing professional development."
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Hundreds of Nordic clinical trials remain unpublished
A new report jointly published by the AllTrials campaign, Cochrane Denmark, Cochrane Norway, Cochrane Sweden, the Dam Foundation, Melanomföreningen, and TranspariMED found that 475 clinical trials involving 83,903 patients completed during 2016-19 in Denmark, Iceland, Finland, Norway and Sweden have never made their results public in any form. This accounted for 22% of all clinical trial results across the five countries.
In cases where clinical trial results were made public, there was often a delay in publication. The report found that only 27% of all trials results were made public, in either registries or in journals, within 12 months. Within two years of study completion, only around half of the results were available to the public.
Not only is this lack of transparency in clinical trials a waste of increasingly scarce public funding, it harms patients and leaves gaps in medical evidence. This makes it very difficult to determine how safe and effective treatments actually are.
Nordic countries have recently changed regulations that require institutions to make the results of drug and device trials public on registries within 12 months of completion. While clinical trials which ended in the years prior to 2023 are not included in this legislation, both the Declaration of Helsinki and World Health Organization have clearly stated for years that the timely public sharing of results is an ethical obligation.
Matteo Bruschettini, Director of Cochrane Sweden, who co-authored the report, said: “At Cochrane we highly value that findings of all studies become available. Otherwise, the synthesis of the evidence misses information thus resulting in misleading conclusions. This ultimately impacts the patients, clinicians and policy makers who need to make decisions based on a distorted picture of the evidence. This report should encourage initiatives to deal with this issue of medical research waste in the Nordic countries.”
The report calls for policy makers in Denmark, Iceland, Finland, Norway and Sweden to adopt national legislation requiring that the results of all clinical trials are made public and to set up monitoring mechanisms. It also calls for national medicines regulators and research funders to put in structures to prevent research waste and ensure that clinical trial results are made public. This is in line with WHO recommendations which urged ethics committees, regulatory authorities, professional bodies, sponsors, investigators, and funding agencies to act in their jurisdictions to ensure results from all clinical trials are reported and publicly disclosed.
The report has already received attention in Swedish media.
Cochrane will continue to advocate for improved clinical trial transparency, and will monitor progress in these countries with interest.
Thursday, February 8, 2024