News from Cochrane

There seem to be some recent ongoing changes at Cochrane, notified on its webpage.

1. From today, 6th Nov, there are changes to Cochrane's privacy policy.

New Cochrane Privacy Policy
Cochrane has updated its privacy policy. The updated version of the privacy policy can be viewed here. The main changes are to provide clearer information on how Cochrane shares and makes international transfers of personal data. The changes take effect from November 6, 2023. By using the Cochrane website from this date, you accept the updated privacy policy





The web page emphasises Cochrane's involvement with consumers.


2."Consumer involvement in practice
  • Consumers involved in the governance of Cochrane - Two consumers sit on Cochrane’s Council and are also represented on a range of Cochrane groups including the Editorial Board.
  • Members of the author team - Lived experience of the healthcare condition, as a patient or carer, can make a substantial contribution to the research question, research design, interpretation of data, and dissemination and knowledge translation of findings.
  • Members of advisory groups - Advisory groups provide oversight and input throughout the whole review process. The authors can turn to them for advice or input when specific issues arise during the review process.
  • The Covid 19 consumer rapid response group - A global volunteer group with a range of lived experience, including people who have recovered from COVID-19 and those who have been care-givers.
  • Consumers as peer reviewers - Consumer peer review involves giving feedback on Cochrane protocols and reviews before they are published to ensure they are relevant and accessible. This ensures better outcomes for patients."


3. There also seem to have been recent changes to the structure of the Cochrane Council and other details
https://community.cochrane.org/newsweek/changes-cochrane-council

At least Cochrane are including patients/carers within the concept of ‘consumers’, though their current shenanigans in relation to the flawed CFS Exercise Review suggest they have a way to go to effectively put their policies into practice.
 
Copying the list here, in case members here realise they know someone on the board. I think these are probably the decision-makers with respect to the 2019 review, so presumably some of these people are blocking its removal.

Editorial Board members
Karla Soares-Weiser: Karla is responsible for ensuring that the Cochrane Library meets its strategic goals: that the quality is of high quality and relevant to the needs of stakeholders. She also has responsibility for working with Cochrane’s publishers and others to ensure that the presentation and delivery of Cochrane content is optimal – and that it is accessible to and actionable by decision makers. Finally, she shares responsibility for ensuring that product is sustainable, and that Cochrane develops its methods appropriately, and that review authors, editorial teams and the methods community are all supported in helping to deliver high quality, high impact products and services.

Toby Lasserson: Toby works closely with the Editor in Chief to deliver the objectives and targets of the Cochrane’s Evidence Production and Methods Directorate. Toby supports the Editor in Chief by leading our global review production operations and helps to implement our goal of offering high-quality, relevant, up-to-date systematic reviews and other synthesized research evidence that informs health decision-making around the world. He leads a team that supports the development of Cochrane Reviews by checking different aspects of the implementation of the protocol methods prior to completion of the write up. This helps to ensure that our reviews are of high methodological quality. He also works with the communications team on disseminating reviews once they are published.

Zarko Alfirevic: Zarko Alfirevic has been Co-ordinating Editor of the Cochrane Pregnancy and Childbirth Group since 2008. He is Professor Emeritus at the University of Liverpool where he was Professor of Fetal and Maternal Medicine, Head of Department of Women’s and Children’s Health and Associate Pro-Vice Chancellor at the Faculty of Health and Life Sciences.
His main research interests are evidence based medicine and clinical trials in high risk obstetrics. He has over 300 publications listed in PubMed and speaks regularly at the international meetings world-wide on topics related to preterm birth, fetal growth restriction, induction of labour and evidence based medicine.
Since 2021 he lives in Zagreb, Croatia and works at the University Hospital “Sveti Duh” as the Assistant Director General for Quality and Patient Safety.

Lisa Bero: Professor Lisa Bero is a researcher in evidence-based health care, and is internationally known for her studies on the integrity of clinical and basic research evidence that is used to influence health policy. She directs the multidisciplinary Evidence, Policy and Influence Collaborative at the Charles Perkins Centre at the University of Sydney, focusing on bias and its influence on the integrity of research. Her work spans basic science through to translation into policy. She has contributed to Cochrane as an author, editor, Centre Director, and member and Co-Chair of Cochrane’s Governing Board. She is also a longtime contributor to the work of the World Health Organization, including serving as a member of the Guideline Review Committee, and as Chair of the Essential Medicines Committee.

Isabelle Boutron: I am Professor of Epidemiology at the Université Paris Cité, head of the Methods Research Team (INSERM- Centre of Epidemiology and Statistics-CRESS), director of Cochrane France, co-convenor of the Bias Methods group of Cochrane and member of the SPIRIT-CONSORT executive committee. I have published more than 200 peer-reviewed articles. My research focusses on bias, transparency, distorted reporting (i.e., spin), and living evidence synthesis.

Robert Boyle: Robert is the Senior Editor of the Children and Families Network, and Joint Co-ordinating Editor of Cochrane Skin. He has been involved with the Cochrane Collaboration since 2006. Robert is a Reader in Paediatric Allergy at Imperial College London, and Associate Professor of Evidence-Based Dermatology at the University of Nottingham. He is also a practicing paediatric allergist in London, UK. His clinical trial and systematic review work has focussed on interventions during pregnancy or the first year of life for preventing the onset of allergic conditions. His current research grants are using individual participant data meta-analysis to better understand the effects of early skin care on risk of allergic conditions, and understanding the impact of commercial pressures on the conduct and reporting of infant formula trials.

Michael Brown: Dr. Brown serves as Editor for Cochrane Evidence Synthesis and Methods. He is the founding chair of the Department of Emergency Medicine at the Michigan State University College of Human Medicine where he also serves as the university’s chief public health. After graduating from medical school in 1986, he completed his specialty residency training in Emergency Medicine and subsequently joined the teaching faculty. It was during this period when he developed a passion for summarizing research evidence in a form useful to clinicians. This interest led to a MSc degree in Epidemiology with a focus on evidence synthesis (i.e., diagnostic test accuracy meta-analysis). Over the last decade, Dr. Brown’s academic leadership roles have included service as senior associate editor for the Annals of Emergency Medicine Systematic Review Snapshot series, chair of the American College of Emergency Physicians guideline writing panel, and as network senior editor for Cochrane.

Emmanuel Effa: Dr. Emmanuel Effa is an associate professor of Medicine at the University of Calabar and honorary Consultant Nephrologist to the University of Calabar Teaching Hospital, Nigeria. He is the deputy director of Cochrane Nigeria, Co-lead of the West African hub of the Cochrane Africa, an editor with Cochrane kidney and transplant and has authored and co-authored Cochrane and non-Cochrane systematic reviews. He coordinates training in evidence synthesis and knowledge translation activities at Cochrane Nigeria.

Cindy Farquhar: Cindy Farquhar is the Postgraduate Professor of Obstetrics and Gynaecology in the Department of Obstetrics and Gynaecology at the University of Auckland. Within the Cochrane Collaboration, she is the Co-ordinating Editor of Cochrane Gynaecology and Fertility.

Gerald Gartlehner: Prof. Gerald Gartlehner, MD, MPH, is a leading expert in evidence-based medicine and evidence synthesis methodology with more than 20 years of experience. His medical training is in family medicine with a medical degree from the University of Vienna; he is also a clinical epidemiologist with an MPH from the University of North Carolina, Chapel Hill, USA. Dr. Gartlehner has served as the chair of the Department for Evidence-based Medicine and Evaluation at Danube University Krems and director of Cochrane Austria since 2008 and has led or participated in numerous comparative effectiveness reviews on prevention, diagnosis, and treatment of various conditions. Many reviews were commissioned by international agencies or organizations (e.g. World Health Organization, American College of Physicians, U.S. Agency for Healthcare Research and Quality) to develop clinical practice guidelines. Dr. Gartlehner is also associate director of the RTI International-University of North Carolina Evidence-based Practice Center (RTI-UNC EPC) and has teaching appointments at Descartes University, Paris, France and the Karl Landsteiner University for Health Sciences, Austria. He has also been involved in various methods groups (including Cochrane Rapid Review Methods Groups and GRADE) that strive to advance the field of systematic reviews.

Jane Noyes: Professor Jane Noyes is Professor of Health and Social Services Research and Child Health at Bangor University, UK, and specialises in complex intervention development and evaluation and development and evaluation of evidence synthesis methodology. Jane has been involved with Cochrane since its inception and is lead convenor of the Qualitative and Implementation Methods Group. She was elected to the inaugural Cochrane Scientific Committee and was founding Co-Chair and now member of the Methods Executive. Jane has published many quantitative, qualitative and mixed-method reviews using diverse methods and supported Cochrane to diversify its review products to meet stakeholder needs and expectations.

Neil O’Connell: Dr Neil O’Connell is a Reader in the Department of Health Sciences at Brunel University London in the UK. He divides his time between research and teaching and previously worked as a musculoskeletal physiotherapist. Neil’s main research interests are in the management of persistent pain with a focus on evidence based practice and he has published extensively in this area. Neil is the Co‐ordinating Editor of the Cochrane Pain, Palliative and Supportive Care (PaPaS) group, was a member of the Guideline Development Group for the UK’s National Institute of Health and Care Excellence (NICE) 2016 guideline for the management of low back pain and contributed to the development of the NICE Quality Standards on this topic. At Brunel University he leads modules in the principles and practice of evidence based healthcare and research methods for post‐graduate clinicians.

Deborah Pentesco-Murphy: Deborah joined Wiley shortly after Cochrane appointed Wiley as their publishing partner in 2003 as an experienced digital publisher. At Wiley she has successfully grown and supported Cochrane over 16 years including the first Cochrane Impact Factor, the first EiC and editorial office as well as extending Cochrane’s global reach and access. Deborah leads the Cochrane team at Wiley.

Ana Beatriz Pizarro: Ana Beatriz from The Early Career Professionals Group is a recently graduated registered nurse from Colombia, who works as a research assistant at Fundación Valle del Lili and as a Junior Researcher for Evidence Aid. Has been involved in the Cochrane Collaboration for the last five years where she has been able to participate in different knowledge translation and active patient involvement initiatives through international networking experiences and improving possibilities for research collaborations. She coordinates the Cochrane US mentoring program and is a member of the Consumer Executive. Her interests are to protect and improve the conditions of the individuals, families, and communities by generating programs, and actions in the Global South through multidisciplinary research to understand the specific health-disease problems, their impact, and possible application in public health.

Rachel Plachcinski: Rachel is a Cochrane consumer and a member of the Cochrane Consumer Network Executive. Her interest in perinatal health research started when she trained as an antenatal teacher with the National Childbirth Trust, the UK’s largest birth and parenting charity, after having her own babies. She went on to study psychology (BSc) and Psychological Approaches to Health (MSc) at the University of Leeds. Her current projects involve being lay co-lead for parent, patient and public involvement at the Policy Research Unit in Maternal and Neonatal Health and Care at NPEU, University of Oxford, and leading on PPPI for MuMPreDiCT, University of Birmingham, and Birth Timing 2 at City, University of London. Rachel is particularly interested in developing and evaluating approaches to maximise consumer involvement in population data research and systematic reviews.

Nicole Skoetz: Nicole Skoetz has been active in Cochrane since 2002, first as a Consumer Co-ordinator and author, then as Managing Editor and since 2011 as Co-ordinating Editor of Cochrane Haematological Malignancies Review Group (CHM). She has also been actively involved in a number of committees, including the Scientific Committee, Prognosis Implementation Strategy Group, Methods Application and Review Standards, and the Co-Eds Executive. By leading Cochrane Cancer right from the beginning in 2014, Nicole has worked to bundle expertise from Cochrane Review Groups (CRGs) and Methods Groups to identify gaps in review production in the field of cancer; engage with stakeholders; collaborate with external international cancer organizations; and apply collaboratively for funding. Nicole have also been active in identifying high-priority research areas to gain funding. She authored two Cochrane exemplar protocols on prognosis - one on prognostic factors and another one on prediction models, both funded by the Federal Ministry of Education and Research (BMBF). She also secured funding from BMBF to conduct five cancer-related network meta-analyses. She also has experience as a guideline developer, including a strong interest in interactive summary of finding tables and using GRADE effectively.

Yemisi Takwoingi: Yemisi Takwoingi is Professor of Test Evaluation and Evidence Synthesis and Deputy Director of the Institute of Applied Health Research at the University of Birmingham, UK. She is a biostatistician with primary research interests in diagnostic test evaluation and in systematic review methodology, especially meta-analyses of diagnostic test accuracy (DTA) studies. She designs and conducts primary studies of diagnostic tests and undertakes systematic reviews of tests in a variety of healthcare topics with national and international collaborators. Yemisi has several editorial roles, including Associate Editor of the Cochrane Handbook for Systematic Reviews of Diagnostic Test Accuracy, Cochrane DTA Editor, Editor in the Infectious Diseases Group and Statistical Editor in the Bone, Joint and Muscle Trauma Group. She co-convenes the Cochrane Screening and Diagnostic Tests Methods Group, and she is a member of the Royal Statistical Society Working Group on Diagnostic Tests and various scientific oversight committees.

Peter Tugwell: Peter Tugwell is the Senior Editor of Cochrane Musculoskeletal, Oral, Skin and Sensory Network. Peter is a Professor in the Department of Medicine and the School of Epidemiology & Public Health at the University of Ottawa, and has a rheumatology practice in the Division of Rheumatology at the Ottawa Hospital. He was Chair of the McMaster Department of Clinical Epidemiology and Biostatistics 1979-89 and Chair of the University of Ottawa Department of Medicine 1991-2001. He holds a Canada Research Chair and is Senior Scientist in the Clinical Epidemiology Program at the Ottawa Hospital Research Institute, and is a Scientist at the Bruyere Research Institute. He currently holds two Canadian Institute of Health Research grants: one that looks at stakeholder engagement in clinical guidelines, and another that examines the criteria for scientific replication of systematic reviews.

Tari Turner: Associate Professor Tari Turner is Director of the National COVID-19 Clinical Evidence Taskforce, leading development of living guidance for COVID-19 prevention and treatment, and an Associate Professor (Research) at Cochrane Australia. Dr Turner leads research developing and evaluating methods for living evidence syntheses, including living systematic reviews and living guidelines; and translating synthesised evidence into improved healthcare practice and policy. Tari’s passion is supporting evidence-based decision-making to ensure the best possible outcomes, particularly for women and children in low resource settings. She is Co-Editor in Chief of Health Research Policy and Systems, a BMC journal published in collaboration with the World Health Organization (WHO), and a member of the Scientific and Technical Advisory Group to the WHO Department of Sexual and Reproductive Health and Research.

Steven Woloshin: Steven Woloshin, MD, MS is a general internist, Professor of Medicine and Community & Family Medicine and Director of the Center for Medicine and the Media at the Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth (Lebanon, NH, USA). His research addresses the excessive fear and hope created by exaggerations and selective reporting in medical journals, advertising, and the health news. He has worked to improve the communication of medical evidence to physicians, journalists, policy makers and the public so they can make wiser decisions.
Along with Lisa Schwartz he developed and ran the NIH Medicine in the Media Workshop for over a decade. He is co-author of 2 books: Know Your Chances (selected for the National Library of Medicine bookshelf) and Overdiagnosed (winner of the Prescrire Prize), his essays have appeared in the New York Times, Washington Post and Los Angeles Times and he is a founding-organizer of the international Preventing Overdiagnosis meeting sponsored by BMJ, Dartmouth, Consumers Union and Oxford and Bond University (Australia). He has frequent collaborations with the National Cancer Institute. He serves on the editorial board of JAMA Internal Medicine, is a series consultant for the British Medical Journal and a strategic advisor to the Cochrane Collaboration Sustainable Healthcare Group. With Lisa Schwartz, he won the American Medical Writer's Association John P. McGovern award for pre-eminent contribution in research and enhancing the communication of medical evidence. He is founder and director of the Lisa Schwartz Foundation for Truth in Medicine.
Dr. Woloshin graduated Boston University School of Medicine, completed internal medicine training at NYU/Bellevue Hospital, and a research fellowship at the White River Junction VA Medical Center in Vermont.
 
Withdrawal of published articles
Cochrane Reviews
Cochrane Reviews are withdrawn when serious issues with conduct or reporting are identified.

Reasons for withdrawing a Cochrane Review or protocol:

  • Serious error in a Cochrane Review. Following the conclusions of the published review could result in harm to patients or populations of interest (other than known adverse effects); and/or there are factual errors in describing one or more included studies that risk misinforming implementation or investment decisions about an intervention; and/or the reported treatment effect is inconsistent with the real effect shown in the reported data.
  • The conclusions of a Cochrane Review are unreliable as a direct result of the retraction of an included study. This could occur if a study, or studies, included in a Cochrane Review are retracted from publication, and an analysis shows that the removal of the retracted studies from the analyses in the Cochrane Review has a major effect on the review. Also see: Cochrane policy on managing potentially problematic studies.
  • Research misconduct in the Cochrane Review. This refers to misconduct during the conduct or reporting of the Cochrane Review.
  • Serious breach of Cochrane’s conflict of interest policy. A ruling by Cochrane’s Research Integrity Editors and CoI Panel that a Cochrane Review has seriously breached Cochrane’s conflict of interest policy.
Withdrawing a Cochrane Review generates a new version of the review with a new DOI. The withdrawn content remains accessible via the version history.

Prior to July 2019, Cochrane Reviews were withdrawn for other reasons (e.g. the review no longer represented the best current evidence or it was superseded by another systematic review). Prior to March 2022, protocols were also withdrawn to inform readers that a protocol would not be progressed to the review stage. This is now indicated by the addition of an Editorial note to the protocol.

Withdrawal followed by republication
The Editors may accept for publication a revised version of a Cochrane Review that addresses the issues raised in the withdrawn notice. Any such version will be re-evaluated using standard Cochrane editorial process, and may then be approved for publication (as a separate, subsequent version) by the Editor in Chief in consultation with the Network Senior Editor.
 
Updating Cochrane Reviews
An update of a Cochrane Review must involve a search for new studies. If any new studies are found, these must be added to the relevant section of the Cochrane Review and classified as included, excluded, or ongoing studies (or ‘Studies awaiting classification’ if all reasonable efforts to classify it in one of these ways have failed), before labelling the revised Cochrane Review as an update. Any other change to a Cochrane Review, and any change to a Protocol for a Cochrane Review, is classified as an amendment.

A Cochrane Review should be updated based on need. Aspects to consider are the currency of the question, the impact and usage of the current version, the availability of additional studies (or additional data for studies already included), and an assessment of the likely change of any newly identified studies or additional data on the current review version; in addition to methodological enhancements that may be required.

Updated Cochrane Reviews acknowledge and cite the previous versions of the same Cochrane Review

Authors need to complete a new licence for publication and declare relevant conflicts of interest for each update.


Comments and complaints
Comments on the content of a Cochrane Review, Protocol or Editorial can be submitted via the Cochrane Library. Concerns about policies, processes, or actions can be raised with the Editor in Chief through the complaints procedure.

Comments
Cochrane welcomes comments on Cochrane Reviews, protocols or Editorials published in the CDSR. Comments are welcome from all users of the Cochrane Library, including patients and consumers. Comments should be submitted via the Cochrane Library and may be published on the Cochrane Library.

See Submitting comments

Complaints
Complaints could apply to the policies, processes, or actions of staff, contributors or position-holders within Cochrane who are involved in the publication or content of the Cochrane Library. Cochrane welcome complaints as they provide an opportunity for improvement, and aims to respond efficiently and constructively.

Complaints are defined as an expression of unhappiness about a failure of process or an important misjudgement. The Editor in Chief of the Cochrane Library is responsible for this complaints procedure and will respond to queries about it.

See: Cochrane Library complaints procedure

Complaints procedure
This procedure applies to complaints about the policies, processes, or actions of staff, contributors or position-holders within Cochrane who are involved in the publication or content of the Cochrane Library. We welcome complaints as they provide an opportunity for improvement, and we aim to respond efficiently and constructively.

We define complaints as an expression of unhappiness about a failure of process or an important misjudgement.

Comment or complaint?
Concerns about the content of a Cochrane Review or Protocol should be submitted as a Comment, please follow our guidance on Submitting comments.

The complaint process exists in parallel with the comments process and may be used either if you believe that the comment is of such a serious nature that urgent corrective action is warranted, or if you believe that the usual process has not been satisfactorily managed or resolved.

How to complain
All complaints should be sent to complaints@cochrane.org, where they will be dealt with confidentially.

How we deal with complaints
All complaints will be acknowledged within three working days.

If possible a definitive response will be made within two weeks. If this is not possible an interim response will be given within two weeks. Further interim responses will be provided until the complaint is resolved.

The Cochrane Database of Systematic Reviews is a member of the Committee on Publication Ethics (COPE), and Cochrane will be guided by COPE's core practices and guidelines when handling complaints. Complainants who remain dissatisfied after this procedure has run its course may consider referring the matter to COPE.
 
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No paywall for me, and I don't think my UCL link would have kicked in, although it might.

Touch of the old mene mene tekel upharsin:

But the writing had long been on the wall. A 2017 review of the NIHR’s investment in Cochrane found considerable differences in productivity and review quality between groups. It also noted that reviews were slow to produce, and that many published reviews were out of date or did not address priority topics. What’s more, the same specialist group that helped authors to produce a review would decide whether it was fit to publish, raising concerns within and outside Cochrane about editorial standards. (Cochrane has acknowledged many of these concerns in reports that highlight the need for reform.)

Interesting perhaps that Cochrane is, however, probably going down the tube mostly for reasons nothing to do with poor quality evidence assessment - unless of course things filter through in smoke filled rooms somewhere and get presented with another slant.
 
Interesting perhaps that Cochrane is, however, probably going down the tube mostly for reasons nothing to do with poor quality evidence assessment - unless of course things filter through in smoke filled rooms somewhere and get presented with another slant.
But why would they? We learned the evidence pyramid with systematic and meta reviews on the top, and that Cochrane provide "high quality evidence". Then it's easy to just accept whatever.

Also process is slow. I'm not sure the "allowed nutrition statements" in Norway have been updated using the most recent Cochrane review on omega-3 fatty acids for example, the old one said omega-3s are good for the heart (so this can be used in advertising), the new one is not as positive. But as long as it's the old one that is in the recommendations... Both of those reviews also have flaws that are very frustrating when regulations are being based on them.
 
But why would they?

From what I hear there are problems much wider than just ME/CFS and pain/FM.
People at NICE are aware of gerrymandering in reviews in surgery, obstetrics and all sorts. That is maybe where the BMJ editorial comes from. People at NIHR probably overlap a lot with people at NICE. Maybe it is just that governments don't really care any more but I don't think we can be sure.
 
From what I hear there are problems much wider than just ME/CFS and pain/FM.
People at NICE are aware of gerrymandering in reviews in surgery, obstetrics and all sorts. That is maybe where the BMJ editorial comes from. People at NIHR probably overlap a lot with people at NICE. Maybe it is just that governments don't really care any more but I don't think we can be sure.
This might be different depending on country, but when I've brought up shortcomings of Cochrane here in Norway I'm usually met with blank stares and "I didn't know that". The brand seem very strong over here.
 
Moved posts

More gems fron CC!
We have two programmes of work that our projects fit into:
Learning and Development Programme
We aim to provide training events and resources for all UK- and Ireland-based Cochrane contributors and others, who are interested in learning more about Cochrane, Cochrane Reviews and disseminating evidence.

Engagement Programme
We aim to disseminate Cochrane Reviews and other evidence to all our key audiences, through social media, events and other communications projects.

To find out more, click on the projects in the left hand menu.
 
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Good spot!
That video though :slugish:
I have only listen to 5 mins enough and am grappling wirh the Dr Spock issue. My son was born on 1984 and suffered a severe viral bacterial virus infection at 8 months old.
He was a persistent projective vomitter.
He had a foam mattress. I later wondered about dust spores being released from this perfect breeding ground for germs.
These mattresses were later implicated in sudden infant death syndrome.
My son had post Viral symptoms/ allergy and intolerances from birth.
He was diagnosed with ME in 1997, on my suggestion....
 
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