The Arthritis NewsletterWinter 2013
Cochrane Collaboration - Better Knowledge, Better HealthBy Colleen Maloney, Marilyn Walsh, Alfretta Vanderheyden, Nicole Prestley and Jenny Leese
Editor’s Note: You may be one of many health care consumers (patients) who is asking: What is the Cochrane Collaboration and why should I have their website saved as a favourite on my computer?
When we read reports of research on topics related to healthcare, how do we know what information to trust? If a study’s results are verified by further research we can have more confidence in these results. This is what the Cochrane Collaboration does – it brings together studies on a topic, evaluates the quality of the studies and publishes the results in summaries written for a public audience.
These summaries can be useful in providing quality information for making informed decisions that will lead to better health.
“Based on the best available evidence, healthcare providers can decide if they should fund production of a particular drug. Practitioners can find out if an intervention is effective in a specific clinical context. Patients and other healthcare consumers can assess the potential risks and benefits of their treatment.”*
The Cochrane Collaboration’s 20th Anniversary Celebrations
The Cochrane Collaboration chose Canada to celebrate its 20th Anniversary this year by holding the 21st annual colloquium in Quebec City. Over 1100 delegates from 48 countries listened, learned and shared better knowledge for better health through plenary sessions, workshops, oral and poster presentations and informal gatherings at coffee and lunch breaks. For all consumers (patients) attending, including Consumer Advisory Board members it was an exciting five days that ended too fast.
For most delegates the days began with a plenary session with each session addressing a different aspect of the colloquium theme: Better Knowledge for Better Health. Categories included recognizing the roll of evidence to support the goals of health care systems; distinguishing the health information needs of different types of decision makers from patient to health policy maker; exploring how systematic review evidence can be used to improve the health of resource-poor and disadvantaged groups; finding opportunities to improve the conduct and reporting of science to meet societies’ needs. Read more……
While all presentations were thought provoking, three were of particular interest.
The first was by Professor Thomas Walley, Director, National Institute for Health Research (NIHR) Evaluation, Trials and Studies, Liverpool University. Professor Walley stated that the NIHR is one of Cochrane’s largest funders and explained why. He said the NIHR contributes because Cochrane helps create a better health service based on systematic reviews. He spoke of the need to measure success/performance and identified the importance of seeking collaboration from patient groups. He also outlined challenges Cochrane is facing as it moves forward such as the need for timely, relevant and higher quality reviews that change practice and lives while recognizing the importance of patient care. He encouraged Cochrane to be “iconoclastic again” and closed his session by toasting the next 20 years and saying, “Think Big – Be Ambitious.”
The second was Dr. Alan Bernstein, President and Chief Executive Officer, Canadian Institute for Advanced Research. Dr. Bernstein provided a brief 370-year history to demonstrate that evidence alone does not change the course of history. He used scurvy as the vehicle and described how Jacques Cartier and his crew survived scurvy at Ste Anne de Beaupré in 1534 by drinking a concoction made by the Iroquois from white cedar trees. The white cedar bark and leaves contained ascorbic acid, Vitamin C. The Spanish didn’t have this evidence and were defeated by scurvy in 1588 when they invaded England. Sir Richard Hawkins knew the value of citrus fruit and ensured “sour oranges and lemons” were on board his ships in 1593 on his voyages to the West Indies and the South Pacific. One hundred and forty three years later, evidence still hadn’t reached the masses. Dissemination was at a stand-still. Many people believed scurvy was caused by idleness. In 1747 Dr. James Lind, a Scottish physician in the Royal Navy conducted the first clinical trial in history to test his hypothesis that citrus fruit could prevent and cure scurvy. He advanced his experiment/trial at sea on sailors who had contracted scurvy by dividing the sailors into six groups. The group that received oranges and lemons on a daily basis recovered within six days; the only other group that showed significant improvement received a quart of cider daily. Although knowledge about the cure for scurvy was available long before and after Dr. Lind’s clinical trial it was not put into practice until 1867 when a daily ration of lime juice was prescribed for all sailors. The point of Dr. Bernstein’s history lesson was to emphasize that evidence alone is not enough. Dissemination is essential.
Third and new this year was the introduction of the Annual Cochrane Lecture. Keeping with the 20th Anniversary theme and celebration, Sir Iain Chalmers, founding director of the UK Cochrane Centre (1992), which convened the meeting that launched the Cochrane Collaboration in 1993, delivered the lecture. Dr. Chalmers described meeting Dr Archie Cochrane who authored the book, Effectiveness and Efficiency – Random Reflections on Health Services. He was impressed with Dr Cochrane’s ideas – ideas that influenced his work as Director of the National Perinatal Epidemiological Unit at Oxford, England and resulted in a database of perinatal trials that eventually lead to the creation of the Cochrane Library. Dr. Chalmers listed the ways in which Cochrane has contributed to the explosion of systematic reviews, and warned against wasteful duplication of reviews and the challenge of keeping reviews updated.
In addition to the plenary sessions, the colloquium had a smorgasbord of presentations to whet every appetite. The consumer workshops were particularly relevant to those of us wanting to expand our knowledge or needing a refresher course. The first and second workshops dealt with making sense of scientific evidence and how consumers can contribute to Cochrane Reviews. Sally Crowe and Gill Gyte, members of the Cochrane Consumer Network (CCNet) and Dr. Dell Horey, Cochrane Consumer and Communication Review Group facilitated.
Both sessions went well. The facilitators created an atmosphere that promoted discussion; individually and collectively they encouraged everyone to comment. Consumers from Argentina, Australia, Canada, Mexico, the United States, and the United Kingdom worked through a press release and systematic review identifying bias, assumption, subliminal messaging and the value of the research based on the number of studies included and the number of people in each study. Consumers left the sessions with renewed confidence.
The Stats Café (Today’s special: Statistics for the terrified). “This sessions must have been developed with me in mind”, said Colleen Maloney. The workshop facilitators, Marialena Trivella – Senior Statistician, CSM, University of Oxford, UK; Sally Hopewell, Co-Scientific Editor and Technical Editor, UK Cochrane Centre; Dr. Yemisi Takwoingi, Public Health, Epidemiology and Biostatistics University of Birmingham, UK; Tamara Rader, Knowledge Translation Specialist, Cochrane Musculoskeletal Group; and Eileen Vilis, Knowledge Broker, Canadian Cochrane Centre designed games to illustrate statistical concepts such as Confidence Intervals, Odds / Risk analysis, and p-Values. “I must confess that our little group, eager though we were, didn’t do well at first”, Colleen confides. “Confusion reigned until Marialena Trivella, Cochrane’s statistical guru stepped in. With both patience and confidence in our ability she untangled the confusion and set us on the path to understanding. There was a lot of handholding, a lot of laughter and a lot of learning too.”
Another extremely interesting workshop about stakeholder/consumer involvement in systematic reviews was facilitated by Dwayne Van Eerd and Emma Irvin of the Institute for Work and Health (IWH). The IWH is an independent, not-for-profit research organization based in the Province of Ontario. (Full details are available at www.iwh.on.ca.) Dwayne and Emma presented a “stakeholder engagement model” used by IWH and led a group of knowledgeable consumers in a discussion comparing the roles of Cochrane consumers/patients and IWH’s stakeholders in the systematic review process.
The main difference is that although some Cochrane Collaboration review groups use consumers to write/edit plain language summaries and contribute to writing teams, the primary role of most consumers is to provide comments for protocols and reviews in the draft stage. The IWH, on the other hand, utilizes its “stakeholders” (a term preferred to consumer) at least five (5) times in a review including the topic selection, research question refinement and dissemination of results. They have found themselves to be trustworthy by end users when stakeholders are part of the whole process. All in attendance agreed that stakeholder/consumer training is essential and that despite being personally affected by the topic of a review, the most effective stakeholders/consumers are able to set aside their personal “stories” and represent a whole group. This creates objectivity and side steps emotional entanglement.
“It was an engaging exchange of ideas”, explained Marilyn Walsh “that led to enlightenment regarding consumer involvement in the review process for both sides.”
Consumers not only attended presentations and workshops, they also delivered them.
Jean Legare a member of CCNet and the newly formed Consumer Advisory Board of the Arthritis Research Centre of Canada at Laval participated in a session titled Patient-Centered Decision Making: Using evidence from bedside to health policies. It began with a skit involving Jean as patient and Dr. Ian Shirer as clinician discussing the evidence for managing low back pain. Jean challenged Dr. Shirer every step of the way and as hard as Dr. Shirer tried he could not navigate around Jean’s opposition. Adding to the hilarity of the skit were the thoughts of both patient and clinician projected onto a video screen ending with Dr. Shirer thoughts that he would never get to his golf game. Three brief presentations followed that proposed solutions to the challenges associated with engaging patients and the public in evidence production and use. The session concluded with an open discussion.
Janet Gunderson and Mary Brachaniec also members of CCNet and the Canadian Arthritis Patient Alliance hosted a workshop with Tamara Rader on Consumer-led knowledge translation: Leveraging patient networks to disseminate Cochrane Reviews. Consumer brainstorming sessions on the best ways to package and share Cochrane Review Results to inform decision-making about the value of exercise as it relates to fibromyalgia produced an abundance of innovative ideas.
Consumers also contributed to the poster presentations. CCNet members Janet and Mary had two posters accepted by the colloquium organizing committee. One showed the many ways consumers are involved with the Cochrane Musculoskeletal Group, and the other described the role and experience of consumer volunteers on a Cochrane review team. Both posters are available on the Cochrane Collaboration website.
Having recognized the utility for tools such as blogs, wikis and social networking sites for disseminating knowledge, it was no surprise that the 2013 Cochrane Colloquium offered sessions involving these Web 2.0 tools. Holly Millward and Sarah Chapman, the UK Cochrane Centre’s (@UKCochraneCentr) Social Media Gurus, hosted a workshop “Sharing Evidence Through Twitter”. The workshop focused on how to utilize Twitter, to disseminate Cochrane Reviews to the appropriate audiences using #hashtags and @twitter_handles. Attendees were divided into groups and each group was given a Cochrane Review Abstract and 140 characters. “The goal was to summarize and promote the abstract using Twitter’s 140-character restriction”, explains Nicole Prestley. “It was the perfect interactive knowledge translation exercise and it showcased how to use Social Media tools such as Twitter, to disseminate Cochrane’s systematic reviews to key stakeholders such as consumers.”
For Social Media Tips from Holly and Sarah, visit the UK Cochrane Centre Website.
Cochrane also offered sessions on Web 2.0 initiatives which are creating an infrastructure for accessible, reliable knowledge, worldwide. This was highlighted by Dr. James Heilman’s presentation, “Wikipedia meets Cochrane: working to get better evidence into mass use”. Dr. Heilman is an Emergency Room Doctor with appointments at the University of British Columbia and the University of Saskatchewan; he is also the President of the Wiki Project Med, a partnership with Wikipedia. Wikipedia is an online encyclopedia. It is the fifth most popular website in the world and it contains 28,000 medical articles, which are viewed 50 million times per month. The metrics show that Wikipedia already has a demand for online medical information; the Wiki Project Med is calling for us to help, by ensuring the supply is evidence-based. Their mission is “a world in which every single person on the planet is given free access to the sum of all medical knowledge”. To date, they have partnered with mobile phone companies in developing countries to give every customer access to Wikipedia without being charged for data. Last year, the Wiki Project Med’s “Translation Task Force” translated one million words of text into the other 285 core languages. The project has now developed a partnership with the Cochrane Collaboration. Much like maintaining a Cochrane review, the Wiki Project Med is encouraging “Cochranites”, health professionals, researchers, consumers and the like, to join the project and help ensure Wikipedia’s medical information is kept honest, evidence-based, and peer-reviewed. The ultimate goal is to create an open-access, evidence-based, peer maintained, synthesis of knowledge.
Check out the Wiki Project Med page for more information.
The Next 20 Years
All too soon it was day five of the colloquium and the closing plenary was about to begin. It focused on the next 20 years.
Chris Mavergames, Director of web management at The Cochrane Collaboration was the first of three presenters. He spoke about the future of knowledge and the role technology will play in moving toward 2033. He said the future is people working with technology and process and explained that data must escape containers (the one-size fits all format), and become nimble (linked). His presentation is available at the Cochrane Colloquium website.
David Bornstein, Author and Journalist, The New York Times opened with the comment, “The wind is at your sails.” His presentation focused on The Cochrane Collaboration as an engine for social innovation. He asked the question: How did social change occur in the past and described success stories from around the world. He explained that behavioural change occurs through intentional spread strategy that brings people together around a common cause, and through framing new aspirational pathways that offer dignity and power.
Mark Wilson, The Cochrane Collaboration’s Chief Executive Officer was tasked with predicting where Cochrane will be in 20 years. He said, “Prediction is difficult especially if it’s about the future.” Nonetheless he sketched a vision to work toward. He said in 2033:
- Cochrane has become the home of evidence to inform health decision-making and is known by clinicians, researchers, policy makers, patients and families on an unprecedented scale.
- Data is king.
- Technology is smart.
- Data manipulation by artificial intelligence can do many of the tasks that take us so long now and has decreased the cost of systematic reviews.
- Cochrane has continued to ask the right questions that are relevant, credible, proportionate and useable.
He said that in 2033 Cochrane has responded to the challenge by Tom Walley to “think big and be ambitious” and he listed Cochrane’s strategic goals to 2020.
GOAL 1: PRODUCING EVIDENCE
To produce high-quality, relevant, up-to-date systematic reviews and other synthesized research evidence to inform health decision-making.
GOAL 2: MAKING OUR EVIDENCE ACCESSIBLE
To make Cochrane evidence accessible and useful to everybody, everywhere in the world.
GOAL 3: ADVOCATING FOR EVIDENCE
To make Cochrane the ‘home of evidence’ to inform health decision-making, build greater recognition of our work, and become the leading advocate for evidence-informed health care.
GOAL 4: BUILDING AN EFFECTIVE & SUSTAINABLE ORGANISATION
To be a diverse, inclusive and transparent international organization that effectively harnesses the enthusiasm and skills of our contributors, is guided by our principles, governed accountably, managed efficiently and makes optimal use of its resources.
Mark closed the colloquium by saying that he believes that all those who have played a vital role in making Cochrane what it is today, our heroes for two decades, would want us to create new heroes, to look to the new generation of people who are spread throughout the Cochrane Collaboration world.
“This colloquium may be a watershed where with a new strategy, we set ourselves on a new course and ask for new heroes, new leaders, new stories”, he said. “We are standing on the shoulders of giants, excited by the road that lies ahead.”
* The Cochrane Collaboration
The results of Cochrane systematic reviews can be accessed at the Cochrane Summaries. To see samples of the reviews, type arthritis into the search box.