Reprinted with permission from the Arthritis Newsletter from the Arthritis Research Centre in Vancouver. CAB members, Sheila Kerr, Colleen Maloney, and Nadia Prestley received stipends from The Canadian Cochrane Centre to attend the Cochrane Canada Symposium 2012 in Winnipeg this May.This newsletter contains an article written by those consumers about their experiences at the Cochrane Canada Sumposium 2012.
The Canadian Cochrane Centre is one of 14 independent, not-for-profit Cochrane Centres worldwide. Over 2,780 people in Canada are Cochrane members who contribute to systematic reviews of treatments used in health care. Systematic reviews are a reliable source of evidence to help people make well-informed decisions about health care. These reviews are internationally recognized as the highest standard in evidence-based health care. They aim to answer the question: "How do you know if one treatment will work better than another, or if it will do more harm than good?" The organizers of this year's symposium stated that evidence from the Cochrane Library should be developed and utilized by all, including vulnerable populations at high risk for disease and adverse health outcomes. The goal is to help build an evidence base that will advance the objective of narrowing the health gap between rich and poor.
Delia Cooper Consumer Advisory Council
The symposium had something for everyone and at every level of research involvement, from beginner to expert. It focused on partnerships and equity in the evidence. Broken into parallel sessions, the Symposium provided subject material that included knowledge translation tools and strategies; workshops; ethical dilemmas; statistics 101; and challenges related to moving from full systematic reviews to a rapid review model. Consumers split up to cover the breadth of offerings, and throughout the two-day conference they met to discuss the sessions and highlight the "take home" messages.
Ms. Theresa Oswald, Manitoba Minister of Health, opened the symposium with welcoming remarks and a challenge to produce evidence that will inform people in policy decision-making positions. She spoke about the importance of a business case to support government funding requests and said that now more than ever evidence is needed to teach [and influence] people in policy decision-making positions. "Evidence," she said, "brings pressure for change."
Tweets, streamed live into the conference room, supported the call for a change of focus from clinical level data alone, to the inclusion of population level data to achieve maximum impact.
The Role of the Cochrane Library in Improving Health Care for All
Dr. Jonathan Craig, Co-Chair of the Cochrane Collaboration, spoke on Cochrane's vision for the future ----improving health by improving health decisions. He confirmed that the Cochrane Library would play a major role by enabling global participation through the use of satellites for reviews; Cochrane Academy; language support; and by strengthening local capacity for methods of support. He said that no matter where a person comes from, life is full of questions. He predicted that within five to ten years, policy makers, consumers, and clinicians with health related questions, will turn to the Cochrane Library. "Our vision," he stated, "is better health care for everyone---beginning with our children." To find out more about the Cochrane Library go to: http://ccnc.cochrane.org/cochrane-library
Dr. Charlie Goldsmith
Colleen attended the workshop, "More than just numbers: understanding statistics in Cochrane Reviews", chaired by Nancy Santesso, Cochrane Applicability and Recommendations Methods Group. "The workshop was exceptionally well done and all participants grasped the concept easily---except me," Colleen explained: "Fortunately I sat beside Dr. Charlie Goldsmith. Charlie holds the Milan and Maureen Ilich/Merck Chair in Statistics for Arthritis and Musculoskeletal Diseases and is a researcher at the Arthritis Research Centre of Canada. Dr Goldsmith is a wonderful person: approachable, willing to help and fun to be with. He doesn't frown on consumers who don't know the answers. He encouraged me to put up my hand and deliver a wrong answer so that I could learn how to better understand the concepts. Now I know how to interpret relative risk, odds ratio, and mean differences". Consumers need to be aware that relative risk statistics can result in the belief that the effect of the intervention is larger than it really is. Remember that if one treatment creates an improvement of 50% over another treatment, it is not meaningful until you know how big the improvement was in the total population --- was it 1 in 100 or 1 in a million? The interpretation of results would be improved if both relative and absolute results were included.
Engaging with the Evidence
Peter Gill, University of Oxford; University of Alberta, presented Capitalizing on Social Media: Cochrane information for the 21st century. He noted that the tide is shifting towards the use of social media (Facebook, blogging, Twitter) in sharing and disseminating research information; in fact, up to one-third of scholars are now on Twitter. This is an understandable development when one considers that social media enables dissemination of research results immediately; promotes debate and discussion; enforces brevity as the user is restricted to 140 characters (Twitter); and is freely available. It also "breaks down the hierarchy of power". Peter discussed four key points in moving forward:
Engage: To capitalize on social media people must use social media
Connect: Link up with others of similar interests and create a community related to your interests
Educate: Begin disseminating information that YOU find important, either as an individual or as an organization
Impact: Track and measure the impact of your social media strategy
The Cochrane Musculoskeletal Review Group has involved patients in many different roles. Consumer Janet Gunderson, described those roles in her presentation "Consumer Involvement in the Cochrane Musculoskeletal Review Group". These roles include providing comments on systematic reviews and protocols, evaluating decision aids, evaluating plain language summaries, helping to guide research priorities, and promoting the Cochrane Library. The involvement of consumers in these significant roles is an important step towards producing research findings that are both more likely to be relevant to consumers and to be used by consumers.
Cochrane Plain Language Summaries
Catherine McIllwain, the Cochrane Consumer Coordinator, spoke about the recently updated access to the Cochrane Library. The site, Cochrane Summaries at summaries.cochrane.org uses a google type search process. It is now much easier to find plain language reviews on specific topics. For example, if you type "arthritis" into the simple single search box you come up with a list of 136 systematic reviews. The summaries can easily be shared by e-mail or through other social media tools like Facebook and Twitter. For information "on the go", the site is formatted to be viewed on a smart phone. Some of the reviews are available as pod casts. The new site also invites feedback from the users, making this a truly interactive tool.
CAB members looked forward to Dr. Peter Tugwell's presentation. Each of the members has had the pleasure of speaking with Dr. Tugwell at various scientific conferences, and all are appreciative of his strong support for consumer participation in health research. Dr. Tugwell holds many positions; among them, Co-Ordinating Editor of the Cochrane Musculoskeletal Review Group and Co-Convenor of the Campbell and Cochrane Equity Methods Group.
Dr. Tugwell presented the new equity-extension to the PRISMA guidelines for reporting systematic reviews, a development which would allow authors to apply an 'equity lens' to all relevant Cochrane Systematic Reviews. He defined health equity as "fairness in outcomes for all segments of the population". The Equity Methods Group encourages authors of both Campbell and Cochrane reviews to include explicit descriptions of the effect of the interventions not only on the whole population but to describe their effect upon the disadvantaged and/or their ability to reduce socio-economic inequalities in health and to promote their use to the wider community. Ultimately, this will help build the evidence base on such interventions and increase the capacity to act on the health gap between rich and poor. In an interview at the 2010 Canadian Conference on Global Health, Dr. Tugwell mentioned that when we are assessing the average health of a community or nation, we must always also ask the question, "How is the health of the poorest 10%?" We must ensure the health of the poorest 10% is not getting worse--- which it frequently is [even though the average, as a whole, may be increasing].
Connie Walker spoke on "Evidence, helping Winnipeg achieve its full potential". Ms. Walker is a public health nurse and Vice President of the United Way, Community Investment. She leads a team of volunteer professionals who strive to understand the issues in the community and the opportunities for positive social change. Her team created Peg, a community indicator system, tracking indicators that reflect and measure Winnipeg's well-being. Indicator information can be accessed, based on theme areas, a neighbourhood map, and / or stories. The website tracks progress on the issues that are important to Winnipeggers through theme areas, a neighbourhood map, and stories. Ms Walker says that these factors, when taken together, present Winnipeggers with relevant information that can be used to guide collective action and inform decisions. The eight key themes that speak to Winnipeg's well being are: Education and Learning; Basic Needs; Health; Social Vitality; Economy; the Built Environment; the Natural Environment, and Governance. We encourage you to visit the website; the stories may tug at your head and heart – www.mypeg.ca
Ms Walker believes in the principle, "if you want to go fast, go alone; if you want to go far, go together. "It's about community change," she says.
21st Cochrane Colloquium
The symposium ended with an announcement that the 21st Cochrane Colloquium will be held in Quebec City. The event will take place in 2013 and is also a celebration of The Cochrane Collaboration's 20th anniversary.
CAB members would like to thank Cochrane Canada for providing consumer stipends to attend the symposium and for their dedication to consumer involvement!
Better Knowledge for Better Health | Un meilleur savoir pour une meilleure santé
Join us in beautiful Québec City, Canada, from 19-23 September 2013, as we celebrate The Cochrane Collaboration's 20th Anniversary.
Québec City is over 400 years old and is the only walled city in North America. Fill your social and scientific calendars with all this picturesque place and our superb Colloquium have to offer. Watch our Colloquium video for a taste of what you will experience in this majestic city.
Keep your eye on our Key dates! - Call for abstracts opens 25 February 2013
Visit the website often for more updates.