Julia Harlfinger works as medical editor and research associate for Cochrane Austria at the Department for Evidence-based Medicine and Clinical Epidemiology, Danube University Krems. Her academic background is in public health, biology and science communication. Here, she shares information about their website that provides health information to the public in German.
It is an online platform. We provide reliable health information in German – which is usually hard to find on the internet, especially for the regular citizen. Every year, we publish 90 articles.
Who is the project’s target audience?
Everyone, but especially lay audiences who are seeking health information online! In 2018, we had 1.5 million site visits. This success was completely unanticipated when Medizin-Transparent started as a small pilot project of two months in 2011. Medizin-Transparent pioneer Bernd Kerschner built everything from scratch and still is head of the team.
How does Medizin-Transparent find its topics?
All members of the public can email their health-related questions, and our team answers them. Therefore, Medizin-Transparent’s topics are user-driven and quite varied, and they often reflect recent developments, such media coverage of cohort studies on cancer, the latest fad diets or political developments. Some of last year’s questions were: "Do ready-made meals cause cancer?" or "Do smoking bans have positive health effects?" In terms of visits, one of our most successful articles deals with the question of whether there are withdrawal symptoms after discontinuation of certain antidepressants. If requested by our readers, we also assess products that are marketed as “good for health” with the help of “scientific studies”. Our conclusions are not always appreciated by the respective companies. We also routinely receive inquiries from the media even though we do not deliver simple messages. Furthermore, we cooperate with the Austrian Consumer’s Association and provide articles for their monthly magazine.
The methods behind Medizin-Transparent?
Our multi-disciplinary team includes 5 members with a quite diverse academic background: medicine, pharmacy, molecular biology, public health, psychology, zoology, science communication, political sciences, history. The team conducts ultra-rapid reviews, synthesizes and grades the evidence. We put an emphasis on presenting facts, numbers and risks appropriately for lay people. Therefore, we follow the 15 criteria of “Good Health Information Practice”, and we are among the first institutions in Austria with our own peer-reviewed methods manual on health communication: https://www.medizin-transparent.at/wp-content/uploads/Methodenpapier-Medizin-transparent_v1.0.pdf. We want transparency to be key in what we do – it should not only be in our name.
What is special about Medizin-Transparent?
It is an open-access website, free for everyone to read. Also, anyone can ask a question free of charge, and our team will answer as many as possible. We receive no industrial sponsorship, and there are no advertisements on our site. Being completely funded by the public through central and federal governmental agencies gives us the much-needed independence and time to produce evidence-based health information. We aim to contribute to enhancing health literacy – which is one of Austria’s health targets.
What lessons do you want to share with other Cochrane Groups?
We are proud that Medizin-Transparent has gained so much visibility and trust. Getting to this stage was a year-long process that required the commitment from Cochrane Austria and the institutions that fund us. We get the impression that citizens appreciate our translational work – even though we quite often report about frustratingly small effect sizes and low certainty of evidence.
Cochrane’s simplified Chinese multi-lingual team share the secret of their social media success with WeChat in this Cochrane Community blog post.
WeChat is a Chinese multi-purpose messaging, social media and mobile payment app. It was first released in 2011, and by 2018 it was one of the world's largest standalone mobile apps, with over 1 billion monthly active users. It is also known as China's "app for everything" and "super app" because of its wide range of functions and platforms.
We spoke to Cochrane’s simplified Chinese Translation Team: Xun Li (Tina), Chunli Lu (Jenny), Jing Li (previous), and Yuqi Li, who use this tool to both disseminate translations and manage their language translation volunteers.
Can you tell us how you came to use WeChat for knowledge translation activities? What is WeChat for people who don’t know?
WeChat is a social App, like Facebook and Twitter. WeChat is used to talk with up to 500 people in one group. Our WeChat group has 152 people, and all of them can be informed about all messages in the WeChat group. WeChat also has Friend circles, called ‘Moment’ which is similar to a Twitter post. Our manager, Yuqi, edits the post and publishes it in ‘Moment’, which will then go out to the group. All translators can see their contributions published on Cochrane.org and broadcasted in the WeChat friend circle.
In China, almost everyone has a WeChat account, so it is the best way to disseminate Cochrane evidence. Nowadays, there is an increasing number of people from outside China registering with WeChat, so it is becoming even easier to introduce WeChat to them.
You can download WeChat here (English version) or here (Chinese version).
Can you tell us a little about your role and the work of your team in Cochrane?
Our team is based on Centre for Evidence-based Chinese medicine in Beijing University of Chinese Medicine. We have been involved with translation activities since 2007. With CENTRAL, we systematically search Chinese medical journals and Chinese biomedical databases to identify records of controlled trials of TCM therapies.
The citations and abstracts for these records are translated from Chinese into English and added to the Cochrane Complementary Medicine Field database of controlled clinical trials of complementary therapies. It is then published online in the Cochrane Library.
Since 2014, the abstract and plain language summaries of Cochrane Systematic Reviews have been translated from English to Simplified Chinese. These translations are published online on Cochrane.org and the Cochrane Library, and are then disseminated via WeChat by our centre in China. To date, we have contributed over 616 translations of Cochrane systematic reviews.
Tina is the lead and the contact person of the Cochrane Simplified Chinese team. Jenny is responsible for managing all volunteers and translations. Jing Li (previous) and Yuqi Li are responsible for managing WeChat and disseminating Cochrane evidence in Simplified Chinese, translated by our volunteers.
Our team is enthusiastic and active. We have a clear job assignment and we can collaborate closely to promote Cochrane evidence translated and disseminated!
What do you enjoy the most about your Cochrane work?
We can facilitate all volunteers who are interested in Cochrane and evidence-based medicine, and they can all contribute to evidence-based medicine practice, which is pretty meaningful. The work helps Cochrane and evidence-based medicine to be accessible to more people.
What success have you had?
We have recruited more than 160 volunteers, and our centre has 24 Masters and PhD students. The team has now translated more than 616 abstracts and plain language summaries.
Our translation operation mode and WeChat dissemination were presented at the 25th Cochrane Colloquium as both long and short presentations.
We have generated 224 WeChat posts, including podcasts, featured reviews, PLSs and blogshots. As of January 5, 2019, our WeChat Public Subscription has 1,829 followers, and the number is increasing every day. In the last month, we had 2,006 readings, and the number of readers were 1182. But there's still plenty of work to be done.
What impact have you had disseminating Cochrane evidence in this format? To whom?
All WeChat users can view all posts, even if they are not our volunteers. If people don’t have a WeChat account, they can also open the WeChat posts link as a general website on their phone or computer. WeChat posts can be viewed by students, volunteers, doctors, and patients, as posts can be forwarded in other friend circles. We are disseminating posts with different topics to WeChat groups of people with different medical interest.
The current format is like a scientific paper, as most users are scientific researchers. Topics in public health and preventive health may attract more attention.
What have you learnt from using this platform?
WeChat is a social communication platform and a handy tool. It is more familiar for Chinese people, and information can be disseminated more conveniently and widely. By producing posts, we also learn the pattern and principles of information dissemination. Thanks to WeChat ’s statistics function, we also get to know what is more interesting to the readers.
How would you like to develop in this format in 2019?
We will continue the dissemination with WeChat; however, there are many possible improvements:
As the WeChat posts of Cochrane evidence increase, we are considering setting categories for different posts, such as different types of diseases and medical areas, so that readers can go through post history more easily;
Expand publicity: We are always encouraging people to follow our WeChat account when there are conferences and academic activities. It would be very helpful if the introduction to our WeChat account could also be presented in some websites, such as somewhere in Cochrane websites;
We are also considering involving more volunteers for WeChat post production.
What would be your message to other language translation teams who may be interested in using WeChat to publicly disseminate their Cochrane work?
WeChat with its comprehensive functionality meets the needs of social communication. We are willing to share experiences with other translation teams and we can discuss the development mode together.
WeChat is the most popular mobile app in China, with more than one billion monthly active users chatting, playing games, shopping, reading news, paying for meals and publishing their thoughts and pictures. If people in other countries start to use WeChat, it would be practical to use it to disseminate Cochrane work.
Our suggestions include:
It is necessary to know about the usage condition of WeChat in the country, because the WeChat public dissemination platform is only an additional function of the app.
It is most effective to promote WeChat public subscription by followers. After we push Cochrane Evidence, all the followers can receive new notifications, and when the followers share WeChat subscription links with their WeChat friend circle, all the follower's friends can see, like and share this content. Therefore, in the early stages, it is suggested to promote in specific groups of people (such as doctors and medical students) to gain followers. Then, get more followers (patients and the public) by sharing translated reviews with them.
If you’ve been following Cochrane Crowd’s activities, hold onto your hats! Our latest challenge held in partnership with the Cochrane Associated Centre at Sinaloa’s Pediatric Hospital (Mexico) and the Autonomous University of Sinaloa (Mexico) was a roaring success, breaking all previously held challenge records.
Over three days from Dec 5-8, 738 people signed up, 455 participated and 319,643 individual assessments were made equating to 89,692 records being screened. 90 people screened at least 1000 records during the challenge and as a result were invited to become Cochrane members. And finally, almost 10,000 RCTs were identified for Cochrane’s CENTRAL register of controlled trials, where they can be accessed by systematic reviewers around the world.
Giordano Perez-Gaxiola, director of Cochrane Mexico and organiser of the challenge, screening in the opening minutes.
We trust you’ll agree this was a hands-down success! Read on for an interview between Emily Steele, Cochrane Crowd’s Community Engagement and Partnerships Manager and Giordano Perez-Gaxiola, director of Cochrane Mexico and key challenge organiser. They discuss Giordano’s motivation for the challenge, how he worked with the Autonomous University of Sinaloa to engage participation, and why the challenge was so successful.
How did you initially become involved in Cochrane Crowd?
At first, it was just curiosity. I found out about Crowd when it was launched and it caught my attention. I tried it and found it very simple to use.
What motivated you to run a Cochrane Crowd challenge?
I had run a couple of small challenges through Cochrane Classmate with my students in the past year. I thought it was a simple way to motivate them to learn what Cochrane is, what a clinical trial is, and how an easy-to-use platform like Cochrane Crowd could help them learn.
Who did you invite to take part in the challenge?
A couple of months ago I had a meeting with the dean of the medical faculty of the Autonomous University of Sinaloa (Universidad Autónoma de Sinaloa, UAS), Dr. Gerardo Alapizco, to discuss how the university and our Cochrane Associated Centre at Sinaloa’s Pediatric Hospital (Hospital Pediátrico de Sinaloa, HPS) could collaborate. I proposed setting up a university-wide challenge in order to engage a large number of students. This would introduce them to Cochrane and hopefully pique their interest, potentially leading to further engagement with Cochrane. This proposal was then discussed and approved by the medical faculty’s governing committee. We agreed that all students at UAS would be invited to take part.
How did you engage the students?
First we made a general announcement to all students. UAS is a very large public State university. We had a conference with all student group representatives, and also sent invitations via WhatsApp groups. After that we had 12 training sessions with students.
We had a launch event for the start of the Challenge and we set up a large screen so that students could see the number of classifications being done, sort of a telethon set up.
Giordano Perez-Gaxiola (seated), Dr. Gerardo Alapizco, dean of the UAS Medical Faculty, (standing behind Giordano) and students at the challenge launch event. The Cochrane Crowd screen can be seen behind.
What was your goal for the challenge?
Our goal was to reach 20,000 classifications, just like the goals set in previous screening challenges like the one during the Colloquium in Edinburgh. We reached that goal in 7 hours! The final tally was 319,643 classifications made by 455 participants in the three days of the challenge.
Dr. Gerardo Alapizco, dean of the UAS Medical Faculty, speaking at the challenge launch event at UAS.
What helped make the challenge a success?
The challenge exceeded our most ambitious expectations.
In my opinion, there are a few reasons for the success of the challenge. First, we had complete support by the dean, Dr. Alapizco, and teachers of the university. Second, we motivated students by explaining the thresholds to gain a certificate (200 classifications) and to become members of Cochrane (1000 classifications). Third, we are giving a first place prize (a sphygmomanometer) to the participant with the most classifications. And last but not least, the university gave them school credits for participation.
Editorial note: read more about the benefits of joining Cochrane Crowd as a student, including certificates and the possibility of Cochrane membership, here.
And finally, what would you say to people who are thinking about running a challenge?
In my opinion, a Cochrane Crowd challenge is a simple way to engage students, to help them learn about Cochrane and about clinical trials. It is very easy to set up (takes about 10 minutes) and easy for the students to participate. It can be a useful teaching tool, too. And if you make it a competition, it can be fun.
Thank you for sharing your experiences here, Giordano. And a huge thank you from the Cochrane Crowd team to Giordano for driving the challenge, to the Autonomous University of Sinaloa and the Cochrane Associated Centre at Sinaloa’s Pediatric Hospital for your support of Cochrane Crowd, and of course to all the wonderful students who took part in the challenge.
Giordano at the Global Evidence Summit with Cindy Leyva and Itzel Rodríguez, two of the students who took part in the challenge.
Has Giordano inspired you to organise a Cochrane Crowd challenge at your workplace or university!? If so, please get in contact and we will support you to get one up and running: crowd@cochrane.org. You can also sign up to Cochrane Crowd, and take a look at Cochrane Classmate, the software we use to run Cochrane Crowd challenges.
Support for Project Transform was provided by Cochrane and the National Health and Medical Research Council of Australia (APP1114605). The contents of the published material are solely the responsibility of the Administering Institution, a Participating Institution or individual authors and do not reflect the views of the NHMRC.
The Cochrane Governing Board is looking for four new members. Cochrane is an international organization but is constituted as a UK charity. Board members are “trustees” of this charity. Charities in the United Kingdom are overseen by the Charity Commission and this Commission emphasizes that being a trustee of a charity is a position with specific rules about the responsibilities of trustees and how they must act. The trustees carry final responsibility for the organization and its staff, and for making sure that everything Cochrane does is for the benefit of the public. Trustees can come from anywhere in the world.
Cochrane is looking for new trustees who not only believe in Cochrane’s core mission, but have the skills and experience required to work at the Board level. The Board’s elected and appointed members work together, as a team, to set strategy, oversee the operationalization of that strategy and to ensure that Cochrane fulfils its fiduciary and governance responsibilities.
We asked current Co-Chairs Martin Burton and Marguerite Koster to tell us something about being a trustee on the Cochrane Board.
What are the most important qualities Cochrane needs in a Board trustee?
Cochrane’s needs are fundamentally the same as any other charity. Trustees should have a strong personal commitment to Cochrane’s aims and objectives. All trustees, of any charity, need to be able to act reasonably and responsibly when they deal with the charity’s affairs. They also need to be able to put aside their own personal interests, views and prejudices so that they always act only in the best interests of the charity.
This can be difficult, especially since all Cochrane’s members work within the organization in some role, such as an author, methodologist, editor, patient or consumer representative, director of a centre, etc. Even though some trustees are elected, once an elected person joins the Board they do not represent the people who elected them. This can be hard to understand, but it is a fundamental principle of trusteeship of a UK charity. You need to set aside the interests of the members of the charity and focus instead on the interests of the “beneficiaries” of the charity. That is, those who benefit from the activities of the charity. In the case of Cochrane, that is the public.
As volunteers, trustees need a high level of commitment because there is a lot of work to do on the Board. Especially between formal Board meetings, when various sub-committees and working groups meet and there are documents to prepare and read. They need to be able to assimilate a lot of information and bring different points of view to any discussion. There will often be times when trustees disagree, but we aim to do this in a respectful and collegial manner. The Board often has vigorous debates about the pros and cons of an issue. But once a vote has been taken and a decision made, it is the obligation of all the trustees to support that decision in public.
Four trustees are to be elected – are you looking for candidates with any specific area of expertise?
We have set out the seven broad areas of expertise and expect that candidates will have at least one of these. Experience of working at Board level in another organization would also be a great advantage although no essential. What is important is a real passion for Cochrane and its work, along with the ability to engage in respectful and constructive debate and ultimately act in the bests interests of the charity.
Who might make an ideal trustee?
There is probably no such thing as an “ideal trustee”. Just as people are different, so are trustees! We particularly want membership of Cochrane’s Governing Board to be broad and to reflect the diversity of the organization. In addition, trustees must demonstrate personal integrity and be able demonstrate understanding of and commitment to the Cochrane community. Trustees must be able to challenge and debate constructively and show trust and respect for other Board members. They must also understand their roles and responsibilities and the behaviour expected of them, as this is clearly defined by the regulations that govern us.
Why are these Board elections particularly important?
As you will all know, there have recently been challenging times for the Board and we recognize the need for increased Board communication with Cochrane’s members. During the Edinburgh Board meeting, four trustees (three elected and one appointed) resigned because they could not publicly support a Board decision with which they disagreed. Consequently, two more appointed members then had to resign so that Board membership would be in compliance with Cochrane’s Articles of Association, which stipulate that there must be one more elected than appointed members of the Board. We look forward to getting the Board back up to full capacity as soon as possible so that we can, as a cohesive group, continue to move forward to address important issues facing the organization.
What do you see as the Governing Board’s priorities in 2019?
The Governing Board will continue to work with the Central Executive Team and Cochrane members to meet the goals and objectives of the Strategy to 2020. In addition, critical discussions and planning will take place to determine strategic priorities beyond 2020. A formal search for candidates for the Cochrane Library Editor-in-Chief position will move forward now that David Tovey has announced his intention to step down at the end of May 2019.
In addition, the Board intends to work closely with the Cochrane Council to further develop or clarify policies related to submission of and handling of grievances, managing conflicts of interest and understanding and complying with the Spokesperson Policy.
What are you hopes and aspirations for Cochrane in 2019 and beyond?
As one of our priorities for 2019 and beyond, it is our hope that we can build greater engagement with Cochrane members by working closely with the Council and the groups it represents. Communication between Cochrane’s Board, the Council and all Cochrane members is vital to creating and sustaining the culture of commitment, connection, passion, open communication and shared values that is necessary to drive Cochrane’s mission forward.
What’s your one message to Cochrane members seriously considering their application for election?
Being a trustee of Cochrane is a worthwhile thing to do. It challenges people to develop and effectively use their skills as a leader; to demonstrate passion, commitment and enthusiasm for Cochrane’s work; and to act with integrity at all times. It is interesting and rewarding, but it also involves a great deal of work to understand and guide the organization’s strategic priorities in a constructive and collaborative manner, and rise above one’s own personal interests. One of the most critical requirements is an ability to understand the roles and responsibilities of a trustee, and to commit to fulfilling these responsibilities above all else.
Find out how to stand for election at elections.cochrane.org. The deadline for nominations is 14 November 2018 and all candidates must have activated their Cochrane Membership by 10 November 2018.
You can check whether you are a Cochrane Member, and amend your communications preferences, at Your Cochrane Membership.
This is part of a series of Cochrane case studies about prioritization work by Cochrane Review Groups. You can read more by visiting the priority setting case study page.
In October 2016 we reported on a priority setting exercise undertaken by the Cochrane Tobacco Addiction Group (CTAG). The group drew on the opinions and experiences of members of the public, health professionals, healthcare commissioners, researchers, guideline developers and funders. You can read about the results here. A clear message emerged – there are still many unanswered research questions in the areas of tobacco use prevention, harm reduction and cessation.
Now the National Institute for Health Research (NIHR) in the UK have put out a large funding call, across a number of its funding streams, for research in these areas. The NIHR cite the findings of CTAG taps as a clear driver for this call. The CTAG exercise resulted in eight tobacco related priority research categories, with corresponding questions, and four overarching priority themes.
The NIHR used the output of the CTAG exercise to develop a commissioning brief for researchers with particular focus on the following areas:
Addressing inequalities resulting from tobacco use
Delivery of smoking cessation support in the UK National Health Service
Quitting tobacco during pregnancy
Electronic cigarettes
The tobacco control system
Quit attempt triggers
Preventing tobacco use in young people
I think one of the most notable things that came out of the process for us that we are currently working on is an overview of behavioural interventions for smoking cessation (‘Behavioural interventions for smoking cessation: an overview and network meta-analysis’). We applied for and were awarded funding for a Cochrane programme grant to carry out the work. The protocol is currently out for peer review before publication and we are in the process of updating the reviews that will feed into the overview.
The Cochrane Tobacco Addiction Group are delighted to see the results of their priority setting project used in this way.
Dr Nicola Lindson, Cochrane Tobacco Addiction Group Managing Editor
Roberto D’Amico from Cochrane Italy shares an interview with Doug Altman. Everyone within the Cochrane community was sad to learn of the death of Professor Doug Altman this year. Doug Altman was a Cochrane leader and pioneer since the Collaboration’s beginning in 1993. He is best known for his work on improving the reliability and reporting of medical research and for highly cited papers on statistical methodology. Doug’s long-serving contributions to Cochrane have been universally acknowledged across the world. He was a long standing co-convenor of Cochrane’s Statistical Methods, and more recently co-convened both the Cochrane Bias and Cochrane Prognosis Methods; he authored over 450 papers in statistical methodology, with 11 being cited more than 1,000 times.
In 1998, I came to the Centre for Statistics in Medicine, which was directed by Doug Altman. For two years I had the privilege of working closely with Doug and his team. That time in Oxford had an important impact on my methodological training and on my way of thinking about clinical research.
In 2013 I was asked to organize a session on state-of-the-art methodology for Cochrane systematic reviews and meta-analyses, at the annual meeting of SISMEC, which is the Italian Society of Medical Statistics and Clinical Epidemiology.
I immediately thought Doug was the person to invite. Unfortunately, he had prior engagements for the dates of the meeting and therefore could not come. I had the idea of interviewing him instead, and when I proposed it to him, he accepted gracefully. We spent half a day together in his office recording the interview. Doug was relaxed and enjoyed answering the questions. I have great memories of that day.
Listening to Doug is always a pleasure. His points of view and his suggestions are exceptionally educational and inspiring. I would like to share his insights with all of you to remember the great person he was and to keep being inspired by him. Doug Altman will always remain an example to follow.
Roberto D’Amico
Professor of Biostatistics
Università di Modena and Reggio Emilia
Azienda Ospedaliero-Universitaria di Modena
Cochrane Italy
The interview is in six parts, with Doug responding to these questions:
This is part of a series of Cochrane Blog posts about prioritization work by Cochrane Review Groups. You can read more about the project and the full series of blog post on the project page.
Setting systematic review priorities is essential to ensure that Cochrane produces the right reviews. Allowing Cochrane stakeholders (consumers, healthcare professionals, policy makers) to engage with Cochrane Groups at the earliest possible stage of review production, places priority-setting at the heart of Cochrane’s Knowledge Translation efforts.
The Knowledge Translation Working Group on Priority Setting (KT Working Group) has developed practical guidance for Cochrane Review Groups and Networks, Geographically-oriented Groups, and Fields to use when defining a set of high priority Cochrane reviews. The guidance note does not recommend a standardized approach for all Cochrane Groups to use, instead it aims to help Groups determine the best approach according to their specific goals and resource constraints.
Whilst the a variety of approaches to priority setting are described in the guidance note, the KT Working Group has defined a set of mandatory standards which relate specifically to review titles being proposed for the Cochrane Priority Review List. Going forward, only reviews that have been derived from a process that follows these mandatory standards will be accepted. There are additional highly desirable standards, which don’t have to be followed to get a title on the list, but will make the priority setting process more robust if followed. We recognize that priorities may emerge in between formal priority-setting cycles (for example because of an emerging health issue, or at the specific request of guideline developers or funders). Clearly, Groups should undertake these reviews as a matter of priority, even if they are not included in the Cochrane Priority Review List. We encourage Groups to justify and document the priority of any reviews that fall outside of a formal process.
The KT training website includes the guidance note, case studies, as well as references to other resources to support each step of a priority setting process.
From October to December 2018 the KT Working Group will run a series of webinars where staff from Cochrane Review Groups and Networks, Geographically-oriented Groups and Fields, can ask questions and discuss any challenges they face in undertaking a priority-setting exercise. In addition, the KT Working Group will contribute to the development of training resources that can support Groups in their priority setting work.
Contribute to priority setting processes of other Cochrane Groups. Information about ongoing processes will be communicated through the community website.
Ruth Foxlee, Senior Programme Manager, Editorial & Methods Department Sylvia de Haan, Head of External Affairs & Geographic Groups' Support, Chief Executive’s Office
This is part of a series of Cochrane Blog posts about knowledge translation work carried out by knowledge translation working groups. You can read more about Knowledge Translation in Cochrane and discover more resources for partnerships development. Here Sylvia de Haan, Senior Advisor on Centres, Partnerships & Fundraising, tells us more about the new guidance on engaging external partners.
Cochrane reviews should help inform health decision making. As the producers of reviews, we cannot do this on our own. Strategic partnerships, at the organizational, regional, national, network and group levels, are essential. These partnerships can be very diverse, from working with local media or a local community organization, to global and national health policy makers, major research funders, as well as a wide variety of health practitioners.
In its partnership policy, Cochrane defines partnership as: ‘A collaborative relationship between two or more parties that have agreed to work together, that is based on trust, equality and mutual understanding, and focuses on the pursuit of common goals that cannot be accomplished by the partners on their own’.
This definition drives our partnership work. The guidance note that is now available aims to provide practical guidance. Partnership development should become a less daunting undertaking, but instead an activity that every Cochrane Group, Network or Field considers when producing or receiving Cochrane review.
The KT training website includes the partnership guidance note, case studies, as well as references to other resources that can support each step of a partnership development process. We welcome any feedback on the guidance and encourage you to share your experiences of your partnership work, so that we can further improve our partnership work and truly make this an added value to what we do.
Richard Morley, Consumer Coordinator for Cochrane, and Sarah Chapman, from Cochrane UK, look ahead to the Cochrane Colloquium in September which, for the first time, is a Patients Included event. This blog post was first posted on Evidently Cochrane.
With the Cochrane Colloquium less than three weeks away we wanted to share how the plans are going to make this our first Patients Included conference, and what people who are coming to Edinburgh or planning to take part from a distance can expect.
The Colloquium is an annual scientific conference for the whole research community – amongst them are researchers, healthcare professionals, information specialists, and healthcare consumers (patients, care-givers, and family members – we have discussed these descriptors in this blog). This year’s theme, ‘Cochrane For All – better evidence for better health decisions’, was chosen to emphasise that Cochrane welcomes everyone, and that everything Cochrane does is about and for patients and other healthcare consumers.
Consumers have always been a part of the conference. But this year we have aspired to improve the experience, make the conference more relevant and increase the opportunities for participation, both in person and virtually. As a way of doing this we have successfully gained Patients Included status. Here’s how we are meeting (and exceeding!) the five Charter requirements. This approach has been at the core of our planning, which has actively involved consumers from the outset, and has influenced so much from the content and its delivery to the practicalities of welcoming a more diverse range of delegates and maximising opportunities for full and meaningful participation.
Some of the participants of our consultation meeting in Edinburgh, October 2017
The cost of conference attendance is a huge barrier, and we recognise that even with a reduced rate for consumers, and a day rate available, it remains unaffordable for most people. We have worked hard to find ways to increase the financial support we can offer, to bring consumers to the conference. Our long-standing consumer stipend fund has been increased from £16,000 to £25,500 for this year and we are pleased to be supporting 22 people to come from all over the globe, with attendees from over 57 countries joining us. We are grateful to Mary Snow for establishing, in her daughter’s name, the Rosamund Snow Prize, to support two young people with experience of using health services to attend the Colloquium, as Citizen Reporters. Cochrane UK is supporting two consumers to come as members of the #BeyondTheRoom team (more of that below) and a number of Cochrane Review Groups and Centres have independently supported patient contributors to attend too. All of this means that number of consumers attending is over 50. As a proportion of 1200 registering to come, that might not seem a lot, but this represents four times as many as normally attend. It’s progress, and something on which to build.
“Little by little, one travels far”*
Of course, it’s not only about the numbers that attend. If you are going to be participating in the Colloquium, you might wonder how this will have changed the experience you can expect.
For a start you might be surprised to see the number of sessions (workshops, Special Session, oral presentations and plenaries) that have a direct relevance to patients. All abstracts were required to state their relevance to patients, or involvement of patients in the work being presented. Patient or healthcare consumers involvement and shared decision-making is a discrete theme this year. It’s the one that attracted the highest number of abstract submissions and a high selection rate too means that there are over 30 sessions on this topic in three days. At the request of people who advised us in the run up to the conference, we are delivering a workshop especially for newcomers, called Begin here! A non-scientist’s guide to Evidence Based Medicine, Cochrane and getting involved’.
In this conference, co-designed with consumers, we will benefit from them participating as co-presenters, as co-chairs of oral sessions, and as plenary speakers. This should improve the relevance and accessibility of sessions.
We are expecting to put into practice many of the suggestions that consumers made during our early consultations, ranging from alternative ways to ask questions during sessions and opportunities to continue exploring themes in keynote talks to spaces to rest and rooms to change clothes or express breastmilk.
Other support being offered to patients and other attenders is increasing too, including break and lunchtime opportunities to engage with experienced Colloquium attenders and to chat informally about Evidence Based Medicine, Cochrane, and getting involved. Stipend winners are offered a buddy to smooth their experience. We have a dedicated member of the Cochrane team who will be available to support consumers with any problems or questions they may have during the conference, and a WhatsApp group for those people who would like to communicate in this way.
We hope we will be joined virtually by many people who aren’t able to be at the conference in person and expanding the ways to get conference content out and bring other voices in is an important element of our work to make this a more inclusive event. For the first time at a Cochrane Colloquium, we will be taking the conversation #BeyondTheRoom. Beyond the Room is a digital conference service, started in 2016 by André Tomlin from the Mental Elf. Its aim is to increase the reach and impact of health events by live tweeting and podcasting from them, to involve people virtually and facilitate a much more democratic conversation. You can read more here.
BeyondTheRoom should make for a more democratic conversation and expanded opportunities to participate.
I talked here about some of the obstacles we thought we might encounter in making this a Patients Included event, including possible resistance to the idea of co-producing and co-delivering the conference and, as Christin Lind highlighted in the #BMJDebate on including patients in conferences, the hurdle of “cultural expectations about what organizers think is expected, necessary, and appropriate”. I think we had not readied ourselves for criticisms of how we are falling short in our efforts, even before we have got to the event, and we are concerned that those involved this time or watching our efforts may decide that it’s all just too difficult to attempt another time. We are, of course, determined to learn both from what goes well and from what didn’t come off or could be done better.We will listen to what people have to say about our Patients Included Colloquium, evaluate the experience and share what learn.We are under no illusions about the limitations of what we’re doing, but we’re doing what is possible for us this year. We will work hard to ensure that what we do will be done as well as possible; that real progress is made, however small scale; that everyone attending, or participating virtually, will do so on equal terms; and that changes will be made that pave the way for more progress to be made in involving consumers in the work of Cochrane and its events.
Changing the way a massive conference, with a long history and expectation about how it works, is a major undertaking, and has involved many people. This includes the many consumers who have given their time in workshops, online, as part of the ongoing Patients Included Advisory Group, as part of the groups that go through the many abstract submissions, or the agonising process of choosing who might receive a consumer stipend. We owe all those who contributed, and are still helping, a huge thank you.
Peter Smart, a member of our Patients Included Advisory Group, gave this realistic assessment in a comment made by email last week:
“I am sure from the discussions I was at in Edinburgh that the initiative really is worth taking, and worth evaluating after the event to see where and how developments/improvements can be made in future years. It has taken a long time to get from the first model T Ford to today’s energy efficient car engines. I am sure #PatientsIncluded will be an iterative process for Cochrane, and future initiatives may even be dependent on the prevailing culture of future host cities.”
We are proud but not complacent about our efforts to make this a Patients Included conference. Like many research institutions we are part of a movement that is striving to find ways meaningfully to involve patients in health research. Last year we endorsed The Statement of Principles for Consumer Involvement in Cochrane. Attendance and participation of consumers at the Colloquium is one expression of this.
We have made a start, but this is not the end point. We were struck by this quote by Arthur Ashe (tweeted by @MightyCasey, who will be one of two consumer members of the #BeyondTheRoom team at the Colloquium) which we think encapsulates our current undertaking:
“Start where you are,
use what you have,
do what you can.”
We hope you will join us. The Colloquim takes place from 16 – 18 September 2018. You can find out more on the event website and join in on Twitter using the hashtag #CochraneForAll, where you can also find us @RMEngagement@SarahChapman30 and Colloquium hosts @CochraneUK.
Sarah’s note: *I was struck by this quote shared on Twitter last week. ‘Poco a poco se and a lejos’ – a Spanish proverb, translated as ‘Little by little, one travels far’. In searching for an image with it that I could share here, I read that it has been erroneously attributed to JRR Tolkien, and can also be translated as ‘little by little, one goes a long way/one goes far’.
Jennifer Dawson works with Cochrane’s Knowledge Translation Department as a Wikipedia Consultant. Her role includes maintaining and building further relations with Wikipedia, connecting new editors to the Wikipedia community, and supporting requests for engagement in Wikipedia work from the Cochrane community
Attention Cochrane contributors and consumers! If you utilize or contribute to Cochrane Evidence on a regular basis, why not take it one step further and share Cochrane Evidence to improve the 40,000 health-related Wikipedia articles?
Sharing evidence on Wikipedia has the potential to reach a large number of people around the world. English health-related content on Wikipedia was viewed over 2.2 billion times in 2017, and health content in all languages on Wikipedia receives approximately 10-million page views a day.
The Cochrane-Wikipedia Partnership was formed in 2014. Presently over 2000 Cochrane Reviews add to the evidence base of Wikipedia articles. The quality of Wikipedia is improving, but there are still thousands of Cochrane Reviews that contain health-related knowledge to share on Wikipedia.
Did your professors and mentors tell you to never use Wikipedia? Did you know that hundreds of medical professionals and researchers from around the world contribute to and maintain Wikipedia on a regular basis? The health-related articles have guidelines (i.e.: WP:MEDRS and WP:MEDMOS) to ensure that knowledge shared is unbiased and reliable. In addition to the human volunteers, “bots” are constantly scanning content to ensure the integrity of articles is maintained.
How can you get involved?
Learn to edit Wikipedia at our upcoming Wikipedia editing session and Edit-a-thon at the Cochrane Colloquium in Edinburgh: Tuesday 18 September 2018: 14:00 to 15:30
Learn from other Cochrane-Wikipedia projects and contribute your ideas at the Cochrane Colloquium Wikipedia Special Session:Sunday 16 September 2018: 16:00 to 17:30
If you are not attending the Colloquium, we have two Cochrane-Wikipedia projects that are set up for volunteers to begin contributing immediately.
Add New Evidence to Wikipedia: Choose a Cochrane Review from our list of Reviews that are not yet in Wikipedia (or from the Cochrane Library) > find a place in Wikipedia where this evidence will help improve the article > paraphrase the evidence into your own words using terminology that can be understood by people who are not in the field > click “edit” and add the evidence (with the Cochrane citation) to Wikipedia > Press submit.
Keeping Cochrane on Wikipedia up to date: Cochrane-Wikipedia bot project (please see the project page for more information)
If you have any questions or want to get involved, please contact me directly at jdawson@cochrane.org
Jennifer Dawson, PhD Wikipedia Consultant for Cochrane JenOttawa (Wikipedia)
