The concept of partnership offers a different way of moving forward. A partnership involves agreement to work toward common ends by agreed means. It also involves motivation and resourcing. And it implies a commitment to press ahead in areas where there is agreement and not to let areas of disagreement stand in the way of progress (Tito and Roche, 1999. Partnerships in General Practice discussion paper, Consumers’ Health Forum, Australia).
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Web address: http://www.cochrane.org/consumers
Contents Page
News 1
About an interesting new review
– from the consumer authors 2
News and information from Groups 5
What’s happening 6
For information 7
Governance 9
Ottawa Consumer reports 9
Nelly Orifa of Kenya – receives a laptop
During the CCNet Annual General Meeting at the Ottawa Cochrane Colloquium Dell Horey of Australia presented a laptop to Nelly. The computer was equipped with everything Nelly would need as a consumer for The Cochrane Collaboration, including a CD-Rom of The Cochrane Library.
Thanks
Introduction to The Cochrane Collaboration on the first day of the Cochrane Colloquium – special thanks to Arne Ohlsson, Andy Oxman and Jane Cracknell for supporting Janet Wale and Maryann Napoli in this session!
Meet the Entities Session – the many consumers present who happily presented an enthusiastic front to make it a good publicity time.
Canadian Survivor Awarded “Pulitzer Prize” of Ovarian Cancer Advocacy
At the end of October, Canadian ovarian cancer advocate Sandi Pniauskas received the ‘Spirit of Survivorship’ award at the Ovarian Cancer National Alliance’s annual Conference – “because of her consistent efforts to help the lives of others who are battling this often fatal disease by raising awareness of ovarian cancer”.
The Ovarian Cancer National Alliance is a patient-led umbrella organization uniting ovarian cancer activists, women's health advocates and healthcare professionals in the effort to increase public and professional understanding of ovarian cancer and to advocate for more effective diagnostics and treatments. Web site: www.ovariancancer.org
Cochrane Steering Group updates
At its meeting in March 2004, the Cochrane Collaboration Steering Group approved the change of the word ‘reviewer’ to ‘author’, to come into effect in 2005/06. You will see a gradual transition e.g. the Cochrane Manual now refers to reviewers/authors.
At its meeting on 1st October 2004, the Cochrane Collaboration Steering Group (CCSG) approved the Wiley InterScience (WIS) Internet version of The Cochrane Library (CLIB). This means that the Update Software Internet version will be withdrawn in three months time.
About an interesting new review!
The review: Prophylactic mastectomy for the prevention of breast cancer. Lostumbo L, Carbine N, Wallace J, Ezzo J. The Cochrane Library Issue 4, 2004.
From the authors: The Experiences of a Consumer Group Conducting a Systematic Review on Prophylactic Mastectomy
Overview: A group of consumer advocates conducted a systematic review on ‘The Efficacy of Prophylactic Mastectomy’. What follows is the story of how we met, the unique situation that was born out of our craving for knowledge that empowered us as informed advocates, and how and why we selected this topic for review. For those of you considering conducting a review, we describe some of our processes, stumbling blocks, and some of the challenges that we faced along the way. We also list some recommendations for those of you who are fearless enough and would like to take on a review in the future.
How we met: The review group was comprised of five members, all of whom were breast cancer survivors. One member withdrew from the group, and one member died of breast cancer during this review; our review is dedicated to her memory. The group members met at a science training course developed by the National Breast Cancer Coalition (NBCC) entitled Project LEAD (Leadership-Education-Advocacy-Development) designed to train individuals to become consumer advocates. Our course was held in October, 1995 in Washington DC.
Breast Cancer/Consumer Advocates: The group members understood the difficult process a woman faces in making the important decisions about her breast cancer treatment, and we also shared a common interest in research on prevention of breast cancer. As women affected by breast cancer, we shared a strong commitment to being involved in volunteer advocacy work to increase breast cancer research and funding for research. Armed with the knowledge gained from Project LEAD, each of us felt that if we could have a seat at the table, we could offer a personal perspective as consumers that scientists did not have.
Journal Club: The camaraderie of studying basic science and epidemiology together at Project LEAD and the desire of the participants to continue our scientific education led to the formation of a journal club in 1996. Dr Kay Dickersin, then an epidemiologist at the University of Maryland in Baltimore, agreed to mentor the group. Each month a group member selected a research article from a current peer-reviewed medical journal and presented to the journal club, critiquing the research, methods, and findings. The journal club members honed their understanding of breast cancer research and further refined their critical appraisal skills before taking on this review.
Taking on a Review: In 1998, Dr Dickersin suggested that the journal club members volunteer to conduct a Cochrane Review on the topic of Efficacy of Prophylactic Mastectomy after a student of Dr Dickersin’s had come to the journal club and presented some of the existing data on this topic. The literature was scant and the group believed this topic needed a consumer perspective. The truth is that we had no idea what we were getting ourselves into. The group agreed to conduct the review, knowing that there would be support and guidance from Dr. Dickersin along the way. One of the driving forces behind the agreement was that the group shared a common belief in the importance of the project.
The Project Became our Shared Avocation: We felt strongly that a review on this topic deserved a consumer perspective. Our goal was to gather all existing papers and evidence, summarize it in one document, and influence the course of future research on the topic. The members of the group had a strong desire to make evidence-based information available to women, and were familiar with The Cochrane Collaboration and that evidence
based medicine is its mission. The question of the efficacy of prophylactic mastectomy was a very timely issue. All of us were aware that there was a lot of controversy on this topic but not much hard data; in addition, many of the studies available were old. In the US., it is often suggested as a treatment option, but many women choose to undergo prophylactic mastectomy in an attempt to prevent breast cancer which is a very difficult decision.
Why This Topic? We naively believed that the efficacy of prophylactic mastectomy was an approachable question for a consumer-conducted systematic review, because it appeared that there was a lack of randomized clinical trials on the subject and there were very few other types of high-quality studies. Because of that, we were confident that we would not have to do any meta-analysis of statistical evidence. However, nothing in our skill set prepared us for the rigor and discipline of conducting a systematic review. Everything took much longer than we anticipated. None of us previously worked on a review or attended any of the training and educational opportunities that are available through some of the Cochrane centers.
Steps Along the Way: Some of the steps in the process consisted of framing the broad question and preparing the search strategy. We were fortunate enough to have an experienced librarian working with us to conduct the library searches on our behalf. Developing the protocol was a group effort, and we went through many drafts for this task. In the beginning, we would schedule a monthly meeting and each of us would have assignments to do before the next meeting. The group members often had very heated discussions in these meetings. One difficulty we encountered was recognizing the importance of the search strategy. As time went on, we continued to refine our search strategy and narrow the criteria to be sufficiently specific.
Expert Resources/Consultation: One of our group strengths was getting the support, advice and cooperation of knowledgeable people. After she began to guide the review process, Dr Dickersin accepted a new position at Brown University, 500 miles away. Losing an expert consultant was a reality check for the group members. We floundered for some time after her departure. At that point, one of the original group members, Annette Drummond, died from breast cancer. Our focus again became derailed. There was serious discussion regarding abandoning our project.
We were only able to get back on track when an experienced Cochrane Reviewer and friend, Jeanette Ezzo, joined our group. She gave us direction and revitalized our energy. It had been easy for us to get sidetracked or derailed because of lack of agreement on including or excluding an article, on the feedback from reviewers regarding the protocol, or what to do about the reviewers’ comments we received once the review had been submitted. As our ‘expert consultant’, Jeannette guided the process and helped us focus on what we needed to do to complete our review.
From Jeanette’s perspective, she came on as a consultant to guide the processes. In her own words, she agreed to help guide the review because “this was a very determined, informed, and cohesive group of consumers that worked on this review”. According to Jeanette, this review reflects years of hard work on the part of the group.
Challenges: One of our most difficult challenges was our lack of experience in conducting a systematic review. Being neophytes meant that we were overly cautious in reviewing the 400 plus abstracts from the first search of the literature. We selected many more articles for further review at first than we would from later searches, giving ourselves piles of articles to read and discuss whether to include. It made this task take years rather than months. By the time we finished the 400+ articles, we had to again do another search, because there was new material available on the topic for our review.
Another big challenge for the group was time. In the beginning of this review, it was necessary to meet in person to define and refine what we were doing because we were inexperienced reviewers. All of us had very busy lives, with each member of the group having full-time jobs and/or family responsibilities. We also underestimated the time of how long each task in the process would take. None of us were employed in the medical/academic fields; we did not have the built-in support systems available to most review groups.
Funding was also a challenge. As a volunteer group, we did not have funding to conduct research. Although we were fortunate to receive a modest stipend from Arm-in-Arm (a Maryland-based
support group) to pay for copying and mailing of articles, etc, this project had no financial backing.
The group is very proud of completing this systematic review; we enjoyed the challenges along the way. To learn a little bit about the members of the review group, we have provided a brief summary about each of us and some of the related advocacy work in which we have been involved:
Liz Lostumbo
Liz has a family history of breast cancer. She is a breast cancer survivor, the daughter of a breast cancer casualty, and the sister of a breast cancer casualty. One of the first things Liz did after completing her own course of treatment for breast cancer in 1995 was to look for some way to become proactive as a survivor. The search led her to join the National Breast Cancer Coalition (NBCC).
Because of her Project Lead and journal club training, over the years she has been privileged to serve as a Consumer Advocate for the California Breast Cancer Research Program (CBCRP) and for the Department of Defense Breast Cancer Research Program in fields ranging from Pathogenesis to Behavioral Science. She found serving on grant review panels extremely satisfying and she was encouraged by the respect given to the consumer advocates' opinions by the scientists serving on the panels.
Nora Carbine
Nora is a breast cancer survivor whose mother died from breast cancer, a sister who is a survivor, and a strong family history of breast cancer. Her advocacy included attending two semesters of the Georgetown University Mini-Medical School, eight weeks of classes designed to give lay people a taste of the basic subject areas that students cover in medical school. Nora also attended the Alternative Medicine mini-medical school course in 1999. In 2000 and 2001, Nora served as a Consumer Advocate reviewer for the California Breast Cancer Research Program in the Etiology and Prevention section. In 2002, she served as a guide at the CBCRP Symposium, helping presenters and the general public interact together at these public poster sessions.
Judi Wallace
Judi’s interest in evidence-based medicine began when she was diagnosed with breast cancer. The information available to consumers was confusing and often conflicting. She went to three hospitals and was offered three differing protocols as treatment options, so she had to make her own informed decisions. She was overwhelmed and found it difficult to locate information that was not written in jargon. She made a commitment to herself that after completing her two-year courses of treatment, she would work to make information regarding breast cancer treatment options more accessible and available in lay language.
Recommendations: We hope that all consumers reading about our experiences will consider participating in a Cochrane systematic review or join a team of researchers on a topic that interests you.
Below is a series of recommendations that we suggest if you decide to become involved in a Cochrane review:
· Take a course in basic science and/or epidemiology, perhaps one offered by a community college in your area, to give you some background in what to anticipate. Project LEAD was our beginning point; a recent Project LEAD was even held in Europe in Madrid, Spain. Check out the National Breast Cancer Coalition website at www.stopbreastcancer.org for details of future course offerings.