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cochrane consumer
network
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Learn more about us and what we do!We have some amazing videos - put together for us by Richard Davis and Barbara Warren
Consumers United for Evidence-based Health Care
The Cochrane LibraryAs long as you can go online, everyone can read the plain language summaries and abstracts of Cochrane reviews. Here is a good way of accessing them! Index of reviews: http://www.cochrane.org/reviews/ Click on a review and you will be able to see the plain language summary and abstract [A protocol is a review under development] -------------------------------------------------------------------------------------------------------------------------------------------- The CCNet Prioritised Review TitlesQuestions that the review topics address: have a look! A database of Cochrane review topics - prioritised by consumers http://cochrane.org/ccnet/prioritisedgroups.html (password - consumers) The web area lists reviews under health areas and the themes identified by consumers. A short statement about the review, obtained from the Plain language summary or abstract of the review (and with input from consumers), is also provided. This database has been made possible through contributions by many health consumers, patients and carers. Overviews of consumer summaries of Cochrane reviewsCCNet is busy working with the Cochrane Complementary Medicine Field to develop overviews that give summaries of reviews using complementary therapies in a range of health areas. We will have them ready for you to comment on before the end of the year. Cochrane Consumer Network (CCNet)NewslettersCCNet newsletter are published every four months and are full of information for those who are interested. The most recent was published in December 2008 (www.cochrane.org/newslett/). We also send out newsletters through our e-mail discussion list: e-mail ccnet-contact@cochrane.de, for information. Cochrane meetingsCochrane Centres, are located across the world. Many centres plan local Contributors’ Meetings. These meetings generally have sessions aimed at consumers and are a good way of finding out more about The Cochrane Collaboration. You can view a calendar of these and other Cochrane events here: The Cochrane Calendar - http://www.cochrane.org/news/calendar.htm Events of significance to consumers:XVII International Cochrane Colloquium to be held in SINGAPORE, 11 to 14 October 2009. Find out about consumer stipends at:
XVI International Cochrane Colloquium was held in Freiburg, GERMANY, 3 to 7 October 2008 The Colloquium provides the opportunity for people involved in the work of CCNet and the Collaboration to meet face to face.
Pictures
Some of the members of the CCNet Geographical Advisory Group
Consumers wantedPeople who are interested in commenting on protocols and reviews in preparation for publication on The Cochrane Library are invited to contact us (E-mail: ccnet-contact@cochrane.de). We are also appreciative of receiving consumer comments on existing protocols and reviews. Other informationCCNet is taking a more active role in working with Cochrane Review Groups to develop plain language summaries of reviews. If you would like to know more about this, e-mail ccnet-contact@cochrane.de for further information.
Vale to Ann Kristin Kampmeier Qualman
from Cochrane Consumer Network, Cochrane Musculoskeletal Group and Friends Ann Qualman passed away at home on Monday 25th June, 2007. Ann was an important member of the Cochrane Musculoskeletal Group and of the Cochrane Consumer Network. We miss this very special person. The following is expressed on behalf of all of us! From Anne Lydiatt, a fellow Canadian I know all the groups she was involved in will miss her – she left a huge imprint on many lives. I met Ann for the first time about 10 years ago at an American College of Rheumatology (ACR) meeting. As consumers we felt privileged to be there but we were on very tight budgets and costs were very high! A mutual acquaintance decided Ann and I would be compatible so we ended up in a ‘budget stretcher’ - 4 women, 2 beds and 4 suitcases in a small, very crowded hotel room with one bathroom! Need I say we got to know one another very well, very quickly! I am not sure when Ann first involved me in Cochrane but knowing her my guess would be that there wasn’t a long time lag between our first meeting and my being enrolled in the Musculoskeletal Group. Once you knew Ann and you knew both what she had done and was doing you would have to be a much stronger person than I to say ‘No’ to any of her requests! She was non-stop action. I shudder to think of my first few forays into Cochrane and my consumer comments – I am sure the authors were as perplexed by my feedback as I was about what it was I was doing. Through all of this Ann was a staunch supporter and mentor, as well as a pusher; she would never let you say no just because you felt unsure. Instead she quietly offered help and support - and made sure you attended the next workshop to get some training! As the years went by we developed a friendship that, like many friendships today, had to exist primarily through email and cards, with the occasional face to face visit. Those were treasured, the more so due to their rarity. Ann always led by example - and what an example she set, in many, many areas of her life. She was active in so many things that it was next to impossible to know her only in one context. I defy anyone to compress their relationship with Ann into one paragraph! I will be forever thankful for her friendship and for all I learned from her. She was a wonderful teacher, mentor and friend and an example of how each person can make a positive contribution to the world. Her influence in the Cochrane Consumer Network along with many other areas, groups and organizations will last forever. I feel honoured to have known her and am thankful for her support and encouragement. And those occasional shoves when they were needed! I will miss her. Peter Tugwell, Bev O’Shea and all of the Canadian-based Cochrane Musculoskeletal Group Ann was indeed a very special person to us. She played a pivotal role in the Cochrane Musculoskeletal Review Group and chaired the consumer group between 2001 and 2007. She was ideal for this with her innumerable connections throughout the consumer community - where she held other major positions such as President of Canadian Alliance of Patients with Arthritis (CAPA). She was one of the first, if not the first, consumer to be formally named as a co-investigator on a Canadian Institutes of Health Research Grant – on the development of a measure to assess the impact of educational and behavioural programs to empower the consumer, the ’Effective Consumer‘. Ann co-authored a paper entitled 'Consumer-driven health care: Building partnerships in research' that was published in Health Expectations By Beverley Shea, Nancy Santesso, Ann Qualman, Turid Heiberg, Amye Leong, Maria Judd, Vivian Robinson, George Wells, Peter Tugwell, and the Cochrane Musculoskeletal Consumer Group. She was also one of the leading consumers for a book published by the British Medical Association entitled 'Evidence Based Rheumatology'. This was a joint process of members from the Cochrane Musculoskeletal Group and the Outcome Measures in Rheumatology (OMERACT) Steering Group. Mary Brachaniec I first met Ann at the Frontiers for Inflammatory Joint Disease Conference in Toronto in 2004. I remember the warmth and kindness that Ann provided in making me feel welcome at my first event relating to arthritis advocacy and the Canadian Arthritis Patient Alliance. She introduced me to the Cochrane Musculoskeletal Group and helped me to write my first consumer peer review. She was a leader in showing many of us the important role that consumers provide within Cochrane and other health research and advocacy initiatives. The highlight of my time in Montréal in December 2005 at the Canadian Cochrane Symposium was the time that I spent having coffee or dinner with Ann. I also appreciated the hospitality shown by Ann and her family in welcoming the consumers to their home for a beautiful dinner and social time in the fall of 2004 during the Cochrane Colloquium. Ann contributed so much to the arthritis community in Canada and around the world and she will be dearly missed. From Janet Wale, colleague from Australia I asked Anne to start this farewell because she was a friend of Ann’s. As I read what she has written I realise that Anne has already expressed sentiments and experiences that mirror mine with Ann. I was a newcomer in Cochrane in 2000 and met Ann for the first time in 2001. A tall and slender woman her strength leapt from her and she was inclusive. I too have a musculoskeletal condition and quickly found myself beckoned in with welcoming arms. Some of my greatest challenges and rewarding learning experiences were made available to me through Ann yet I was aware that she was there, in the background, should I need her. These included being part of the team to define the attributes of an effective consumer and as part of the patient group at an OMERACT conference. Ann has also been one of the pillars of the Consumer Network (CCNet). She has supported and strengthened it in a way that has developed governance and ownership by consumers, patients and caregivers. Because Ann was prepared to work hard without pushing herself always to the forefront I too find it difficult to voice how much she has actually done for CCNet. One special time glows warmly in the hearts of all consumers who were there. The occasion was the Ottawa Cochrane Colloquium in October 2004. Ann and her husband Harry welcomed all consumers from across the World who were at the Colloquium into their tasteful, comfortable home that oozed with beautiful plants and hospitality. We were provided with the ideal setting to talk, get to know each other, establish bonds and our desire to be involved in the work of the Collaboration. Many of the people who were there have responded to Ann’s passing with memories of that evening! Anne Dooley, Canada writes We miss Ann, but she leaves a marvelous legacy that will remain with us for a long time. She was modest and rarely spoke about what she was doing, rather she wanted to know what was going on in the lives of others. She was an arthritis patient who believed in the importance of the patient perspective. Among her many contributions is the role she played in the creation of the Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis (CIHR-IMHA), and the countless consumers she recruited to Cochrane. She was a friend, mentor, leader and supporter. A consummate advocate for people with arthritis, Ann noticed that at meetings with highly placed elected officials it was she they wanted to talk to, not the professionals with the statistics. She told them what it was like to have arthritis and about the barriers the disease created. This led to her vision of creating a grassroots organization of arthritis patient volunteers working to help improve the health of all Canadians living with arthritis. Ann was persuasive and in 2001 she co-founded the Canadian Arthritis Patient Alliance (CAPA) with Denis Morrice who was then President and CEO of The Arthritis Society. She served as President from 2001 through 2005, and CAPA's direction and high standards of performance are the result of her intelligent leadership. This unique organization contributes the patient perspective, patient knowledge and experience, and a true patient voice to help inform discussions and decision making at all levels that affect patient health and well being. Ann's funeral was held on Friday, June 29th in Ottawa. The service was a warm and loving tribute to a remarkable woman, with fond memories contributed from family, friends, and colleagues. From Chris Nelson, Canada Denis Morrice, Lisa, Sharon McConnell and I attended Ann's funeral. I can tell you that it was a very moving event. Many people spoke about her, family, friends, fellow singers, fellow members of the United church, people from the arthritis community (Denis). She was clearly a much loved individual with superior leadership skills and enormous energy and yet humble, quiet and unassuming, a special combination. Her life was very full and she squeezed every drop from it. She will be missed. Hilda Bastian, inaugural Convenor of the Cochrane Consumer Network writes Ann Qualman was a strong woman who knew how to get things done - and she knew how to have a good time, too. She had real consumer street credibility, knowing how to convert her own and her members' experiences of living with painful chronic disease into knowledge and activities that could benefit others. OMERACT is a great example: an important collaboration on what outcomes matter in rheumatology, where Ann and her colleagues have had such an important influence. Her energy and commitment to ensuring that the information from Cochrane reviews on arthritis was developed into patient information that was promoted and used is one of her legacies. Ann helped patients' experiences cross over into research - and researchers' results to cross over into patients' lives. And she encouraged other people to cross over the bridges she built. Ann made a special contribution to several organizations. We're really lucky that she chose Cochrane to be one of them. Ann’s own words were, “My primary role is to facilitate involvement”
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