Specifications: Permanent – Full Time
Salary:  £31,000 per Annum
Location: UK (Remote with occasional travel to the London office)
Directorate: CEOO
Closing date:  05 March 2024

Cochrane is an international charity. For 30 years we have responded to the challenge of making vast amounts of research evidence useful for informing decisions about health. We do this by synthesising research findings and our work has been recognised as the international gold standard for high quality, trusted information.

Cochrane's strength is in its collaborative, global community. We have 110,000+ members and supporters around the world. Though we are spread out across the globe, our shared passion for health evidence unites us. Our Central Executive Team supports this work and is divided into four directorates: Evidence Production and Methods, Publishing and Technology, Development, and Finance and Corporate Services.

The Governance Officer works at the most senior level in the organisation, ensuring the smooth running of Cochrane’s governance function and the systems and processes that support it.

Don’t have every single qualification? We know that some people are less likely to apply for a job unless they are a perfect match. At Cochrane, we’re not looking for “perfect matches.” We’re looking to welcome people to our diverse, inclusive, and passionate workplace. So, if you’re excited about this role but don’t have every single qualification, we encourage you to apply anyway. Whether it’s this role or another one, you may be just the right candidate.

Our organization is built on four core values:

Collaboration: Underpins everything we do, locally and globally.

Relevant: The right evidence at the right time in the right format.

Integrity: Independent and transparent.

Quality: Reviewing and improving what we do, maintaining rigour and trust.

You can expect:

• An opportunity to truly impact health globally.
• A flexible work environment
• A comprehensive onboarding experiences.
• An environment where people feel welcome, heard, and included, regardless of their differences.

Cochrane welcomes applications from a wide range of perspectives, experiences, locations, and backgrounds; diversity, equity and inclusion are key to our values.

How to apply

• For further information on the role and how to apply
• The deadline to receive your application is 5th March, 2024.
• The supporting statement should indicate why you are applying for the post, and how far you meet the requirements, using specific examples.
• Read our Recruitment Privacy Statement

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.”

• Read more about Cochrane Sweden's collaboration on trial transparency report
• Read about Cochrane's past issues with social media and their fight against misinformation 

Cochrane is delighted to announce the launch of the twelfth module within the Cochrane Interactive Learning course, on qualitative evidence synthesis (QES). 

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."

• Visit Cochrane Interactive Learning

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.

Specifications: Permanent – Full Time
Salary:  £42,000 per Annum  
Location: (Remote – Flexible) UK, Germany, Denmark. Candidates anywhere from the world will be considered; however, Cochrane’s Central Executive Team is only able to offer consultancy contracts outside these countries.
Directorate: CEOO
Closing date: 18 February 2024
 
Cochrane is an international charity. For 30 years we have responded to the challenge of making vast amounts of research evidence useful for informing decisions about health. We do this by synthesising research findings and our work has been recognised as the international gold standard for high quality, trusted information.

Cochrane's strength is in its collaborative, global community. We have 110,000+ members and supporters around the world. Though we are spread out across the globe, our shared passion for health evidence unites us. Our Central Executive Team supports this work and is divided into four directorates: Evidence Production and Methods, Publishing and Technology, Development, and Finance and Corporate Services.

As a Manager within Cochrane’s Central Executive Team, you will support Cochrane’s Geographic Groups, Networks, and Fields, play a pivotal role in supporting sustainable development, coordinating activities, and enhancing accountability frameworks. This position focuses on fostering collaboration, overseeing communication, and promoting growth within Cochrane’s global networks.

Don’t have every single qualification? We know that some people are less likely to apply for a job unless they are a perfect match. At Cochrane, we’re not looking for “perfect matches.” We’re looking to welcome people to our diverse, inclusive, and passionate workplace. So, if you’re excited about this role but don’t have every single qualification, we encourage you to apply anyway. Whether it’s this role or another one, you may be just the right candidate.

Our organization is built on four core values: Collaboration: Underpins everything we do, locally and globally. Relevant: The right evidence at the right time in the right format. Integrity: Independent and transparent. Quality: Reviewing and improving what we do, maintaining rigour and trust.  

You can expect: 

• An opportunity to truly impact health globally.  
• A flexible work environment  
• A comprehensive onboarding experiences.
• An environment where people feel welcome, heard, and included, regardless of their differences.

Cochrane welcomes applications from a wide range of perspectives, experiences, locations, and backgrounds; diversity, equity and inclusion are key to our values.

How to apply

• For further information on the role and how to apply,
• The deadline to receive your application is 18th Feb, 2024.
• The supporting statement should indicate why you are applying for the post, and how far you meet the requirements, using specific examples. 
• Read our Recruitment Privacy Statement

Last week, Cochrane participated in the 154th session of the World Health Organization (WHO) Executive Board meeting in Geneva.

The Executive Board is composed of 34 technically qualified representatives from different Member States, elected for three-year terms. Every January, the Executive Board meets at WHO headquarters to discuss global public health priorities for the year ahead and set the agenda for the World Health Assembly.

In addition to the Executive Board, all Member States and civil society organizations in official relations with WHO, such as Cochrane, are given the opportunity to contribute. This provided our delegation a great platform to advocate for evidence-based health policy. 

The session began with an opening statement by WHO Director-General. He highlighted the key achievements of the previous year, including the landmark decision to include life-changing treatments for multiple sclerosis drugs in the Essential Medicines List, which Cochrane Multiple Sclerosis and Rare Diseases of the CNS played a key role in.

WHO’s 14th General Programme of Work (GPW14) was a major focus of this year’s meeting. GPW14 is a medium-term strategy agreed by Member States and will defines the direction of WHO’s work (including on evidence-based health) for 2025-28, with the goal to promote, provide, and protect health. 

Emma Thompson, Cochrane’s Advocacy and Partnerships Lead, made a statement in front of Member States and WHO’s Director-General, speaking on behalf of Cochrane in applauding the draft GPW’s recognition of WHO’s science and evidence-based leadership, particularly highlighting the importance of high-quality evidence in health decision making. 

In addition to the official planned activities at the Executive Board meeting, Cochrane’s delegation used the opportunity to meet with several different WHO departments to discuss plans for Cochrane’s Scientific Strategy, which is currently in development, and opportunities for our next joint workplan.

Our delegation had many productive conversations with key individuals and teams on how Cochrane and WHO can continue to work together to address global public health priorities in the coming years. Supported by our years of relationship building, collaboration and advocacy, we held meetings with many WHO teams, covering a wide range of portfolios including maternal, newborn and child health; essential medicines; malaria, tropical diseases; nutrition; clinical trials; guidelines; health emergencies; and science. 

Another key highlight of the week was a meeting between Cochrane’s Editor-in-Chief, Dr Karla Soares-Weiser, and the Director of the Pan American Health Organization (PAHO), Dr Jarbas Barbosa and Dr Rhonda Sealey-Thomas, PAHO Assistant Director. During the meeting, they discussed collaboration between Cochrane and PAHO, which is underpinned by a new memorandum of understanding and Dr Soares-Weiser highlighted Cochrane’s enthusiasm for the formalisation of this partnership.

• Find out more about the 154th session of the Executive Board

Today marks the official opening of registration for attendance at the second Global Evidence Summit (GES) 2024. Organized by the world’s leading organizations in evidence synthesis and evidence-based practice, including Cochrane, JBI, Guidelines International Network (GIN), and The Campbell Collaboration, the summit is set to take place in the historical city of Prague, Czech Republic, from 10 to 13 September 2024, with satellite meetings on 9 September 2024.

The GES is intended as a multi-disciplinary and cross-cultural event to exchange ideas about how we best produce, summarise and disseminate evidence to inform policy and practice, and using that evidence to improve people’s lives across the world. The summit will feature plenary keynote speakers, special sessions with panel experts, and traditional conference elements like posters and oral presentations. There will also be a robust social program to make sure there are plenty of opportunities to network and have conversations across sectors, such as health, education, social justice, the environment, and climate change. The programme domains include:

• Sustainable development agenda
• Research integrity & making evidence accessible
• Power of synergy in evidence & synthesis products
• Evidence translation & implementation
• Advocating for greater evidence communication & use of evidence
• From global evidence to local impact 

Miloslav Klugar, Chair of the Scientific and Local Organising Committee, extends a warm welcome:

“On behalf of our organising partners, I invite you all to join us for the eagerly anticipated 2nd Global Evidence Summit. You belong at GES! It’s a unique gathering of research and scientists, policymakers and managers but also students, consumers and activities, and patients and caregivers. This is a unique opportunity for people across the globe to get involved in evidence-based practice, with a shared mission to provide a platform to discuss critical issues across different sectors, including health, education, social justice, the environment and climate change.”  

Catherine Spencer, Cochrane's CEO, emphasizing the significance of the GES in fostering synergies and knowledge sharing within the global evidence community:

" I encourage the Cochrane Community to take advantage of Early Bird Registration for the 2nd Global Evidence Summit. Your participation will not only enrich your knowledge but also contribute to a global movement towards impactful, evidence-informed decision-making. Let's unite for #GES2024 and contribute to advancing evidence-based practice globally! We look forward to seeing you there!"

Early-bird registration is now open until 13 June. Standard registration is open until 14 August with late/onsite registration available. We also offer discounts to those from low-income economies as well as patients/consumers and students.

• Visit the GES website
• Learn more about registration
• Registration form

Specifications: Fixed term (2 years), 0.6 FTE
Salary:  £35,000 pro-rata
Location: (Remote – Flexible) Candidates anywhere from the world will be considered; however, Cochrane’s Central Executive Team is only able to offer consultancy contracts outside these countries.
Closing date:  6 February 2024 

Cochrane is an international charity. For 30 years we have responded to the challenge of making vast amounts of research evidence useful for informing decisions about health. We do this by synthesising research findings and our work has been recognised as the international gold standard for high quality, trusted information.

Cochrane's strength is in its collaborative, global community. We have 110,000+ members and supporters around the world. Though we are spread out across the globe, our shared passion for health evidence unites us. Our Central Executive Team supports this work and is divided into four directorates: Evidence Production and Methods, Publishing and Technology, Development, and Finance and Corporate Services.

The Consumer Support Officer will work closely with Cochrane’s Consumer Engagement Officer to support the involvement of consumers (patients, carers and the public) in the Wellcome-funded GALENOS project, including in systematic reviews about mental health topics. Support of consumers in this work will involve connecting consumers with lived experience of mental health challenges to researchers, developing learning resources to support consumer involvement in systematic reviews, and generally promoting patient and public involvement in the systematic review space.  

Don’t have every single qualification? We know that some people are less likely to apply for a job unless they are a perfect match. At Cochrane, we’re not looking for “perfect matches.” We’re looking to welcome people to our diverse, inclusive, and passionate workplace. So, if you’re excited about this role but don’t have every single qualification, we encourage you to apply anyway. Whether it’s this role or another one, you may be just the right candidate.

Our organization is built on four core values: Collaboration: Underpins everything we do, locally and globally. Relevant: The right evidence at the right time in the right format. Integrity: Independent and transparent. Quality: Reviewing and improving what we do, maintaining rigour and trust.  

You can expect: 

• An opportunity to truly impact health globally.  
• A flexible work environment  
• A comprehensive onboarding experiences.
• An environment where people feel welcome, heard, and included, regardless of their differences.

Cochrane welcomes applications from a wide range of perspectives, experiences, locations, and backgrounds; diversity, equity and inclusion are key to our values.

How to apply

• For further information on the role and how to apply
• The deadline to receive your application is 6th Feb, 2024.
• The supporting statement should indicate why you are applying for the post, and how far you meet the requirements, using specific examples. 
• Read our Recruitment Privacy Statement

Specifications: Permanent – Full Time
Salary:  £64,000 per Annum  
Location: (Remote – Flexible) Candidates anywhere from the world will be considered; however, Cochrane’s Central Executive Team is only able to offer consultancy contracts outside these countries.
Closing date:  9 February, 2024 

Cochrane is an international charity. For 30 years we have responded to the challenge of making vast amounts of research evidence useful for informing decisions about health. We do this by synthesising research findings and our work has been recognised as the international gold standard for high quality, trusted information.

Cochrane's strength is in its collaborative, global community. We have 110,000+ members and supporters around the world. Though we are spread out across the globe, our shared passion for health evidence unites us. Our Central Executive Team supports this work and is divided into four directorates: Evidence Production and Methods, Publishing and Technology, Development, and Finance and Corporate Services.

To lead and hold responsibility for Cochrane’s editorial operations, and to support the Deputy Operations Manager and Editor in Chief of Cochrane in achieving the strategic aims and delivering the objectives of the Cochrane Evidence Production and Methods Directorate (EPMD).   

Don’t have every single qualification? We know that some people are less likely to apply for a job unless they are a perfect match. At Cochrane, we’re not looking for “perfect matches.” We’re looking to welcome people to our diverse, inclusive, and passionate workplace. So, if you’re excited about this role but don’t have every single qualification, we encourage you to apply anyway. Whether it’s this role or another one, you may be just the right candidate.

Our organization is built on four core values: Collaboration: Underpins everything we do, locally and globally. Relevant: The right evidence at the right time in the right format. Integrity: Independent and transparent. Quality: Reviewing and improving what we do, maintaining rigour and trust.  

You can expect:  

• An opportunity to truly impact health globally.  
• A flexible work environment  
• A comprehensive onboarding experiences.
• An environment where people feel welcome, heard, and included, regardless of their differences.

Cochrane welcomes applications from a wide range of perspectives, experiences, locations, and backgrounds; diversity, equity and inclusion are key to our values.

How to apply

• For further information on the role and how to apply
• The deadline to receive your application is 9th Feb, 2024.
• The supporting statement should indicate why you are applying for the post, and how far you meet the requirements, using specific examples. 
• Read our Recruitment Privacy Statement

Poster sessions are a key component of most academic conferences. However, rows of text-heavy posters can be difficult for attendees to navigate, particularly for those for whom English is not their native language, or who may be neurodivergent or disabled. Cochrane recently teamed up with researchers to introduce poster templates for the Cochrane Colloquium based on the latest research. The results from the 'real world' assessment are now available. We spoke with the researchers to find out more. 

Can you tell us a bit about your elite poster research team, so we have an understanding of how you are approaching academic posters?Sure! Our team includes Dr. Zen Faulkes, author of the book “Better Posters” and founder of the Better Posters blog; Dr. Mike Morrison, the psychologist who created a redesign for scientific posters that went viral and started the #BetterPoster movement; and Dr. Emily Messina and her colleagues at IPG Health Medical Communications (Noofa Hannan, Victoria Evans, and Anja Petersen) and Helios (James Wells).  

What do you see as the purpose of academic posters?
For all the criticism posters get, they have incredible potential and play a crucial role in science communication. A scientific poster session is one of the only learning environments in science where researchers walk into a room completely open to learning. So, a key function of scientific posters is to give scientists broad, serendipitous insight into work going on across their whole field. Poster sessions are also a great way to meet people with similar research interests. Networking is a key purpose of attending a poster session, but the job of the poster itself is to communicate key ideas quickly (and engagingly!) in a stressful and demanding, busy environment.

Most conference attendees can probably relate to this. Most academic posters follow the same format that they always have. What’s wrong with them?
Imagine that you’re standing in front of a wall where somebody has taped up printed pages of a scientific paper, and you’re trying to read all that dense text and those tiny figures on the pages from four feet away. Now imagine trying to do that while there are a hundred other similar ‘posters’ you would like to see in a short time, while also trying to listen in to what the presenters are saying. Now imagine trying to do that if you’re someone with low vision or a processing disorder that amplifies the lights and sounds in the room. It’s difficult to learn anything from the poster in that context, which is why people often just give up and ask the presenter to explain the study, or just walk away.

That’s the core problem with the traditional scientific poster design: it ignores the context of just how busy and overwhelming the room is. This could be because the traditional design was created decades ago when poster sessions were much smaller.

There is also a harmful feedback loop in scientific poster design, where authors with (typically) no design training feel like they need to ‘fill up all the space’ with text and figures to ‘show that they did work’, and then the poster session attendees learn just to accept that cluttered posters will always be the norm and have to make do with them.

We had over 300 posters at Cochrane Colloquium and walking through them you could see many people used the accessible template. It felt less mentally overwhelming and was fantastic to walk around and learn from them. Can you tell us a bit more about the templates offered?
The #BetterPoster template we provided was based on the latest research in instructional design, accessibility, and eye tracking. It was designed to teach people something (typically the main finding) from a far distance; making it possible for them to learn something from every poster in the room, not just the few that they stop at. Then, the remainder of the poster is designed to quickly communicate additional details (limitations, key figures, methods) still visible at about 3ft. The figures also include mini takeaways, to help people interpret graphs while also trying to, for example, pay attention to you, the presenter. Finally, it includes a QR code that people can scan to get the author’s contact details or read the whole paper. The template was just that – a starting point to make it easier for people to get creative and make their own accessible posters. It was wonderful seeing people use the template whilst also adding their own touches.

At the event you made observations, interviewed people, and did a survey of attendees afterwards. What did you learn?
It was a great three days at the Cochrane Colloquium, seeing the poster template being embraced and people’s response to it. We just got back from presenting our findings at the 2024 European Meeting of the International Society for Medical Publication Professionals. Our survey and interviews found that more accessible poster designs may improve engagement and communication at conferences. People found the posters with large figures and limited text to be more engaging; posters using the template were cited as memorable or informative; and they were also easier to understand. 

That's fantastic. This template was made specifically for the Cochrane Colloquium. What can researchers and those creating posters for any conference take away from this?
While the template was designed to the specifications of the Cochrane event, you can tailor them to any event that you need to present a poster at! We encourage all academics to download the template and adjust it as they need to. We're excited to see what you come up with; please tag pictures of your poster with #BetterPoster on social media so we can see them!

• Learn more about the research findings
• Learn more about the accessibility of different conference presentation formats
• Download the #BetterPoster template

Cochrane is an international, not-for-profit network of clinicians, patients and carers, researchers, and policy-makers creating high-quality healthcare evidence synthesises. Cochrane has a long and rich history of collaborating with healthcare consumers and this is the story of what breast cancer patients experienced when contributing to a Cochrane Review.  

In 1995, Nora Carbine and Liz Lostumbo, both former breast cancer patients, embarked on a transformative journey as attendees of the Leadership, Education, Advocacy, and Development (LEAD) program developed by the National Breast Cancer Coalition (US). Designed to equip patients with the necessary scientific and leadership essentials for becoming proactive advocates, this five-day initiative taught by notable scientists provided a platform for people with breast cancer to amplify their voices.  

One of the founders of LEAD and a course teacher was  Kay Dickerson MD, an epidemiologist and an active Cochrane member. Post-LEAD, Dr. Dickerson encouraged them to form a Journal Club, meeting monthly with her. Initially guided by Dr. Dickerson's article choices, the members eventually took the reins, presenting their findings on breast cancer research articles. Over a transformative two-year period, they developed their skills in scrutinizing research methods, assessing statistical validity, and distinguishing misinformation. Dr. Dickerson proposed to the group – would they be interested in leading on conducting a Cochrane systematic review on mastectomy to prevent breast cancer (prophylactic mastectomy)? 

A determined group of seven breast cancer advocates undertook the challenge to provide accessible information on prophylactic mastectomy for both patients and physicians, emphasizing the importance of informed decision-making. Guided by Dr. Dickerson and Davina Ghersi at Cochrane, they submitted their plan of study (Protocol) to Cochrane in 2000. They would gather at each other’s houses after work or on a Saturday morning and go through article after article, debating which ones to include and which to exclude. Despite one of the original members and driving force, Annette Drummond, becoming seriously ill with a recurrence of breast cancer, other members dropping out, and the abundance of evidence they had to wade through, the Cochrane review published in 2004, four years after this remarkable journey started.  

A unique feature of Cochrane reviews is that they are updated when new evidence is available. Classes in RevMan (Cochrane’s software for preparing and maintaining Cochrane and other systemic reviews) were taken and more people were added to the team, including an experienced reviewer. The first updated review was published in 2010. 

“Actress Angelina Jolie revealing her family history and her procedures coupled with the increasing availability of DNA testing, thrust the topic of mastectomy for breast cancer prevention into the limelight," says Liz Lostumbo. “We worried that women facing the decision of whether to undergo a prophylactic mastectomy might only encounter anecdotes in the popular media. We were particularly concerned about the lack of discussion concerning the quality of life for patients after mastectomy. The Cochrane review and its accompanying plain language summary became our means of addressing the critical gap in knowledge." 

For the third revision in 2018, they brought in more expertise and updated the wording, changing “prophylactic mastectomy” to “risk-reducing mastectomy”. The review is highly cited, has been made into a Cochrane Clinical Answer for clinicians, and has been included in three clinical guidelines. The plain language summary has been translated into 8 languages making it more accessible globally to patients making a decision and has been included in several Wikipedia articles.  

Nora and Liz note that they will hand other future updates to authors who can break the review into parts that ask more concise questions and produce more high-value conclusions – some of this work is already underway.  

“For us, the whole process of being the only group of patients to take on the responsibility of preparing a review and updating it was one of great satisfaction and pride,” says Nora Carbine. “We believe our work has helped thousands of women facing the decision of having a mastectomy to prevent breast cancer by providing evidence they need to be well informed to make their choice. We applaud Cochrane for giving us the opportunity and thank those who supported us in our endeavour.” 

Cochrane is extremely proud of Nora and Liz and all our patient and advocate volunteers. “While the work of Nora and Liz is extraordinary, it embodies the spirit of what Cochrane is trying to achieve.  We are proud to engage with patients to co-produce health evidence that is meaningful, easy to understand, and can be used for decision-making,” explains Richard Morley, Cochrane’s Consumer Engagement Officer. “The Cochrane Consumer Network has played a formal role since 1995 with over 2,000 members and Cochrane has a formal framework for involving patients, carers, and the public. While it’s likely most patients and caregivers aren’t as ambitious to author a Cochrane systematic review, we do hope this story is an inspiration for others to join our work.” From learning about health evidence and making informed health choices to volunteering to read over our plain language summaries on our volunteer hub Cochrane Engage, there are lots of ways you too can make a global impact on health! 

• Read a more detailed account of Nora and Liz’s story 
• Join Cochrane’s work as a patient, carer, or member of the public 

A new Cochrane Library Editorial has been published about the history of a recently updated Cochrane review on healthcare decision aids and its implications for practice. There is also an accompanying podcast where you can hear the current lead author explain the need for the review and its latest findings in under four minutes.

Decision aids are one type of tool that can be used to support the process of shared decision making between patients and their health professionals, a key element of person-centred care and health system improvements. A major update to the landmark Cochrane review on decision aids has just been published with an analysis of 209 studies involving 107,698 participants. It provides clear evidence of the benefits of the use of decision aids over usual care across a huge array of health options, ranging from choices about cancer screening to decisions about major elective surgery.

An accompanying editorial describes the influence of this review on practice for over 20 years, with successive updates responding to the changing understanding of decision aids and shared decision-making over this time. The review has been referred to in more than 90 clinical practice guidelines and has been one of the most cited reviews published in the Cochrane Library for over a decade. 

With more convincing evidence of the benefits of using decision aids now available, the editorial discusses implications for practice and highlights some remaining challenges of implementing decision aids. This Cochrane review will continue to be updated and the authors hope to see the findings not only reflected in many guidelines but implemented across many health systems. 

• Read the Cochrane Library editorial 
  Ryan RE, Hill S. Decision aids: challenges for practice when we have confidence in effectiveness. Cochrane Database of Systematic Reviews 2024, Issue 1. Art. No.: ED000164. DOI: 10.1002/14651858.ED000164.

• Read the Cochrane review
   Stacey D, Lewis KB, Smith M, Carley M, Volk R, Douglas EE, Pacheco-Brousseau L, Finderup J, Gunderson J, Barry MJ, Bennett CL, Bravo P, Steffensen K, Gogovor A, Graham ID, Kelly SE, Légaré F, Sondergaard H, Thomson R, Trenaman L, Trevena L. Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews 2024, Issue 1. Art. No.: CD001431. DOI: 10.1002/14651858.CD001431.pub6.
  
  
  
  
• Listen to the podcast
  Current lead author, Dawn Stacey from the University of Ottawa and Ottawa Hospital Research Institute in Canada, explains the need for the review and its latest findings in under 4 minutes.
  
  

• Evidently Cochrane blog - Decision aids: helping people make better healthcare choices
  When faced with healthcare choices, how do we work out what to do? Decision aids can help, as can good conversations with our clinicians as part of shared decision-making, discussions that take into account clinical expertise, evidence and personal factors such as our preferences and circumstances. This blog includes Joanna’s story of her experience of making an important treatment decision but without the benefit of supportive discussions with her surgeon, plus some Cochrane evidence and useful UK resources.