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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Cochrane Consumer Network Issue 8, December 2004

Contact e-mail: ccnet-contact@cochrane.deE-mail discussion list: consumers@cochrane.deWeb address: http://www.cochrane.org/consumersContents PageNews 1About an interesting new review – from the consumer authors 2News and information from Groups 5What’s happening 6For information 7Governance 9Ottawa Consumer reports 9Nelly 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. ThanksIntroduction 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 AdvocacyAt 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 updatesAt 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 MastectomyOverview: 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

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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

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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 LostumboLiz 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.

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Nora CarbineNora 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 WallaceJudi’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.

Sign up for a mini-medical school course as Nora did or read the scientific journals in that

subject area to learn of opportunities available to consumers.

We suggest that you participate as a peer reviewer for an ongoing review that is looking for advocate participation. None of us had gone through the process of a review before this undertaking.

Sign up for some of the Cochrane training seminars or educational opportunities that are offered in affiliation with the various centers across the world.

Make sure that you have the drive and the determination to conduct the review, including each of the steps along the way.

Look closely at your reasons for deciding to do the review—as we mentioned, there were many times we felt frustrated, overwhelmed, and almost gave up.

Keep your focus and set up schedules that all agree to adhere to for meeting your deadlines.

The Consumer Role in Collaborative Review GroupsWhat’s a review good for without a consumer?What we consumers contribute is our experiences as a patient or consumer

– also ‘what and how’ we feel and what we want to know as we read the review!

– process and structural matters are the concerns of others in the review process;

– if we keep our comments ‘to the point’ we make them ‘more accessible’;

– with insight, we can ‘speak’ on behalf of patients with a health condition.

What to do if our comments are not taken note of?- keep persisting (with this or another review);- use the comments and criticisms function on

The Cochrane Library;- help develop Collaboration policy on consumer

participation through CCNet.From a consumer perspective, discussion about health care and healthcare needs has many undertones. Inherently included are health beliefs, self efficacy, locus of control and individual needs;

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influenced by the course of disease, co-morbidities, cultural understandings of reality, the associated costs and burdens, changes in life style and quality of life expectations. Ideally we need information on the optimal clinical outcomes as well as trade offs in settings of points of care, the key gateways to the health care required, and more generally access, with a sense of mutual respect and support. Evidence based practice has a need to incorporate contextual views (values) as well as evidence to be effective.From Janet Wale (Consumer) as a result of discussions in Ottawa.

Contributing to the e-mail discussion listThe e-mail list serve, consumers@cochrane.de is a moderated e-mail discussion site that passes through stringent checks. We would like to hear from you!

News and information from Cochrane groupsBack Group Victoria Pennick – wants to hear from consumers willing to comment on their reviews and synopses.E-mail: Cochrane@iwh.on.caProfile: The Cochrane Consumers and Communication Review Group By Megan Prictor, Review Group CoordinatorWithin the international Cochrane Collaboration there are 50 Review Groups, each of which prepares and maintains Cochrane reviews relevant to a particular set of health problems. These reviews seek to answer questions about the effects of healthcare interventions.The Consumers and Communication Review Group is based at La Trobe University in Melbourne, Australia under the direction of Coordinating Editor Dr. Sophie Hill. We coordinate the production of Cochrane systematic reviews of the effects of interventions (particularly those which focus on information, and communication) that affect consumers’ (patients’) interactions with healthcare professionals, services and researchers. The interventions may relate, for example, to individual use of healthcare services, to techniques and media

for communicating information to patients, or to consumer participation in health planning, policy and research. Further details are available on our website: www.latrobe.edu.au/cochraneThe Consumers and Communication Review Group is often confused with the Consumer Network – the key difference is that the Review Group publishes systematic reviews about interventions affecting consumer/professional interactions, whereas the Consumer Network’s core function is, as you know, “to provide consumer input into developing Cochrane systematic reviews of best evidence in health care and in utilising this evidence”.1 While the Network does not publish reviews itself, consumer members have input to Cochrane reviews across all healthcare areas. The Group’s completed reviews assess the effects of such interventions as decision aids; recordings or summaries of consultations for people with cancer; interventions for helping patients to follow prescriptions for medications; and personalised risk communication for people considering whether to undergo screening. Consumer Network members may be particularly interested to hear about a forthcoming review of “Interventions for promoting consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material” by Elin Nilsen et al. We hope that this review will be ready for publication in the next six months, and are very pleased that the authors have identified a number of high quality trials for inclusion. If you would like any additional information about the Consumers and Communication Review Group, would like to join our mailing list, or become involved in other ways such as a consumer referee or review author, please contact me. I look forward to hearing from you!Cochrane Consumers and Communication Review Group E-mail: m.prictor@latrobe.edu.auWeb: http://www.latrobe.edu.au/cochrane/

Summary of consumer involvement with Australasian Coordinating Network of the Neonatal Review GroupIn early 2003 in Sydney, a small group of consumers attended workshops to receive an introduction to systematic reviews and the Cochrane Neonatal Review Group and also received training in providing feedback on protocols and reviews. As it was difficult to initiate and maintain consumer

1 Source: http://www.cochrane.org/consumers/about.htm, 30 Nov 2004.

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feedback and to engage review authors in consumer input, the group compiled a document to encourage authors of Cochrane neonatal reviews to consider a consumer perspective in their protocols and reviews.The document states the advantages of consumer involvement in reviews, and provides tips for making reviews more consumer friendly. Consumers from the Sydney group, as well as other consumers in the Cochrane Collaboration have identified that reviews are more accessible and useful when medical jargon is avoided or explained and objectives and outcomes are clarified. These issues are also useful for clinicians who need to communicate with the parents of newborns in their care. Currently, the document is in draft form and is being reviewed by review authors and the Neonatal Review Group editorial base. We hope it will encourage more consumer involvement in the future.Jane Bell, Research Officer for the Australasian Coordinating Network, Neonatal Review GroupE-mail: jbell@perinatal.usyd.edu.auA new Methods GroupThe Information Retrieval Methods Group: the Co-Convenors are Steven Pritchard, University Librarian at Cardiff University, and Carol Lefebvre, Information Specialist at the UK Cochrane Centre.  The Co-ordinator is Alison Weightman E-mail:  WeightmanAL@cardiff.ac.uk 

Please let us know of any changes to contact details:

ccnet-contact@cochrane.de

What’s HappeningMeetings for 2005UK Contributors Meeting, 14 – 15 MarchManchester Conference Centre, Manchester.It is important that those wishing to attend register early to receive the early bird registration fee of £175. Consumer stipends are available for consumers based in the UK or Ireland, applications need to be received at the UK Cochrane Centre by Friday 17th December 2004. Caroline Rouse E-mail: CRouse@cochrane.co.uk

5th Annual Campbell Collaboration Colloquium, 23-25 February, 2005

Corinthina Alfa Hotel,Lisbon, Portugal Theme: Supply and Demand for Evidence - Systematic Reviews and their Use Featured Speakers include:Grover (Russ) Whitehurst, Director, Institute of Education Sciences, U.S. Department of EducationBarry McGaw, Director, Directorate for EducationOrganization for Economic Cooperation and Development (OECD)J. A. Muir Gray, Director, National Electronic Library for Health National Health Service, UKRegister online: www.campbellcollaboration.org

Cochrane Colloquium 2005Plans are well underway for the XII Cochrane Colloquium which is to be held in Melbourne, Australia from October 22nd to October 26th 2005. The preliminary programme can be viewed atwww.cochrane.org.au/colloquium/

For InformationRosemary Humphreys (UK) says: I have just been sending out emails with regard to work I'm doing with the Research Group of the Royal College of GPs re the shortage of patients for clinical trials in Primary Care research. You might be interested in a pilot version of Bec Hanley's work de-mystifying clinical trials for patients is at www.nelh.nhs.uk/clinicaltrials

About CCInfo

CCINFO is the primary email list for The Cochrane Collaboration. It offers an excellent means of keeping members of the Collaboration well informed about the activities and policies of the Collaboration. The list is moderated and is used for announcements and discussion of matters relevant to the Collaboration as a whole.

To subscribe, send an email (from the address you normally use) toccinfo-list-request@mailman.mcmaster.caThe content of your message is simply subscribeThat's it. Don't fill in the subject or add a signature. Send it. Subscription is free.

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It is possible to delete or add your name to the list on the web at http://mailman.mcmaster.ca/mailman/listinfo/ccinfo-list.

CCNet web pages and www.cochrane.orgThe Cochrane Consumer Network has a new web collection at www.cochrane.org/consumersThe main Cochrane web site (www.cochrane.org) has many interesting features that have been added this year, as the web manager Dave Booker describes.

Our ‘impact’ section now includes press releases, a graph showing growth in publication of Cochrane Protocols and Reviews, and "The dissemination of Cochrane evidence: an inventory of resources that use Cochrane reviews" from the recent project at the Canadian Cochrane Centre. It's all at www.cochrane.org/reviews/impact.

Expanded 'Newsroom' and 'Opportunities' pages, already available on several Cochrane web sites via live news feed, are at www.cochrane.org/news A new administrative dates calendar has been added to www.cochrane.org/news/calendar.htm.

Looking for the quickest way to find an entity's (public) address or phone number, without logging into the IMS? Go to www.cochrane.org/contact.

A paper by Michelle Deeks, "Cross-cultural team work within the Cochrane Collaboration" presents issues and guidelines to help Collaboration members understand cross-cultural communication and work effectively ininternational teams. It's at www.cochrane.org/docs/crossculturalteamwork.doc

New Cochrane policy statements have been published online. Two are: a statement on support for prospective registration of clinical trials www.cochrane.org/news/articles/2004.07.26.htm and a new commercial sponsorship policy www.cochrane.org/docs/sponsorshippolicy.htm

The Cochrane LibraryThe submission dates (set by the publishers for when review group coordinators submit new or updated reviews and protocols) for the next issues are:23rd February 2005, Issue 2;

25th May 2005, Issue 3;24th August 2005, Issue 4.Publication dates:24th January 2005, Issue 1;20th April 2005, Issue 2;20th July 2005, Issue 3;19 October 2005, Issue 4.

Review: E Murray et al: Interactive Health Communication Applications for people with chronic disease (Issue 4, 2004, The Cochrane Library).November 2004: The Cochrane Collaboration wishes to report that the review ‘Interactive Health Communication Applications for people with chronic disease’ (1) has been found to contain errors. The review originally determined that,

among other findings, chronically ill people using interactive programmes had worse clinical outcomes than those who did not. Regrettably, errors in data analysis meant that these outcomes were reported incorrectly. The authors are currently re-analysing their data and will be resubmitting their results to The Cochrane Library (2) in the future. It is expected that the revised results will be published in April 2005.Interactive Health Communication Applications (IHCAs) are computer-based interactive programmes for patients that combine health information with at least one mode of support – social support, decision support or behavioural change support. IHCAs are designed to provide people with chronic disease with the opportunity to become better informed about their disease and the various treatment options available.The Cochrane Collaboration supports high standards of quality control and welcomes comments on and corrections to any reviews published in The Cochrane Library. Compared with traditional paper journal publishing, the Collaboration’s open and transparent process ensures that all Cochrane reviews are available for real-time correction, providing experts and healthcare consumers alike with the opportunity to give their input. Crucially, this process also allows researchers and others to inform review authors of previously unreported or unrecognised trial results, allowing them to improve the quality of reviews as

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they are periodically updated over time. The Cochrane Collaboration regrets that this particular review was found to contain inaccuracies, apologises unreservedly, has acted swiftly to mitigate both this error (which arose from individual error and not systemic failures) and the likelihood of it being repeated, and undertakes to ensure that the corrected results are published as soon as possible.Nick Royle, Chief Executive Officer, The Cochrane Collaborationand Wiley InterScienceIn October 2004, The Cochrane Library was launched with a new interface through Wiley InterScience. To see the new WIS CLIB Internet version, and the transition arrangements, see www.thecochranelibrary.com and click on 'Transition Information' under 'special features'.Countries and states that have provisions by which some or all of their residents are able to access The Cochrane Library for free include: Australia; Denmark; England; Finland; Ireland; Norway; South Africa; The Canadian Province of Saskatchewan; The US State of Wyoming.There are also several programmes, such as the Health InterNetwork Access to Research Initiative (HINARI) that provide free or low-cost access in developing countries.Wiley & Sons writes: the new CLIB is the first stage in a continuous development process, with the future seeing the development of more accessible versions that will become ever more useful for health professionals, consumers, policy makers, review authors, and other potential customers and users.  Deborah Pentesco-Gilbert at Wiley asks for any suggestions for enhancement of the Library. These can be sent direct to her (dpentesc@wiley.co.uk) although CCNet would like to also be advised of any suggestions so that we can present a united front (E-mail: ccnet-contact@cochrane.de).

The International Alliance of Patients’ Organizations (IAPO), based in London UKis helping to build ‘patient-centred health care’ around the world, in all parts of the world and in different disease areas – but what does this mean? Patient-centred health care can incorporate many concepts. These include patient involvement in decision making, patient information, effective

communication, partnerships in care, and access to treatment. These can mean different things to different stakeholders. Yet IAPO wishes to communicate the patient’s perspective and needs to those involved in health care as policy makers, professionals, companies, hospitals, and associations and to assist them in the application of these principles.In September, CCNet responded to their request for information on how we see patient-centred care:- as provision of care in a way that enables effective and open communication between service provider and patient. Information on diagnosis, prognosis, and treatment options (benefits, size of benefits, and possible harms) is given in a way that allows shared

decision making based on evidence, patient values and social circumstances. This moves on from a purely medical model - together the patient and service provider develop an integrated management plan that gives self responsibility to patients for health. Access is provided to required services.

Principles and concepts involved are: communication, balanced information, patient centred outcomes, and self responsibility.Decision Aids are important - Cochrane review by Annette O'Connor (O'Connor AM, Stacey D, Entwistle V, Llewellyn-Thomas H, Rovner D, Holmes-Rovner M, Tait V, Tetroe J, Fiset V, Barry M, Jones J. Decision aids for people facing health treatment or screening decisions (Cochrane Review). In: The Cochrane Library, Issue 2, 2004. Chichester, UK: John Wiley & Sons, Ltd. There is also a Cochrane review on a patient centred approach: Lewin SA, Skea ZC, Entwistle V, Zwarenstein M, Dick J. Interventions for providers to promote a patient-centred approach in clinical consultations (Cochrane Review). In: The Cochrane Library, Issue 2, 2004. Chichester, UK: John Wiley & Sons, Ltd.

GovernanceAnnual General Meeting held Tuesday 5 October in Ottawa.

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New Coordinating team members Are from a spread of geographical countries and are willing to provide time and energy to ensure that CCNet is a democratic organization of consumers active in The Cochrane Collaboration.Liz Whamond (Canada), Gill Gyte (UK), Silvana Simi (Italy), Sara Yaron (Israel), Fiona Tito Wheatland (Australia) and the two CCNet Steering Group representatives Janet Wale (Australia) and Godwin Aja (Nigeria).Decisions made to:≈broaden the definition of a consumer: Health consumers are defined as people with direct or indirect experiences of health care and who are generally without specialized medical knowledge or working as health professionals. This term is used more broadly than for patients actively under treatment.The change is to acknowledge the commitment and enthusiasm of people from a wide range of backgrounds to the work of CCNet;≈work toward registration as a Cochrane field;≈set up a working Group to work on a set of rules for the governing body of CCNet to follow. The working group is: U Hla Htay; Nelly Orifa; Liz Whamond and Fiona Tito Wheatland.≈The final financial report of the CCCNI was passed in Ottawa. The association, incorporated in South Australia in 2001, was officially deregistered on 18 November, 2004.≈Any suggestions for people on an Advisory Group for CCNet? Please sent these to E-mail: ccnet-contact@cochrane.deThese people would have both expertise and availability to support the work of CCNet.Ottawa Cochrane Colloquium“The Colloquium is the best introduction to The Cochrane Collaboration. It gives the impetus to throw your hat into the ring and get involved.” (Colleen Maloney)Some presentations are on the Canadian Cochrane Centre web site athttp://www.cochrane.mcmaster.ca/ottcolloquium.asp. * Abstracts of posters and presentations from the recent (Ottawa) Cochrane Colloquium can be searched and browsed at www.cochrane.org/colloquia/abstracts

Consumer reportsFrom the Ottawa Cochrane Colloquium, October 2004These reports have been edited. They highlight many important issues from which CCNet members can learn. All reports said a special thank you for a well-organized colloquium and the commitment

that went into consumers being able to attend. Ottawa was a lovely city and a very safe, friendly and helpful city to visit. Sylvia Beamon (both a consumer and a reviewer), Airways Group, UKIt was lovely to meet you all at the Colloquium and put faces to the correspondents. Ottawa was a delightful venue for the 12th Cochrane Collaboration Colloquium. Everyone was most, polite, helpful and efficient considering the large number of delegates attending.It is interesting to see how changes are evolving in both the actual format of reviews and other aspects of the Cochrane itself (I joined December 1996). As the topics I am interested in (Speleotherapy for Asthma and Hydrotherapy for Asthma) have a paucity of randomised controlled trials because the interventions are different as no placebos can be given [e.g. patients would know if they were going underground or not. The same applies to people entering pools], I realised by attending Tom Jefferson's workshop on 'Methodological Issues' other fields have the same problem and he is proposing that non-randomised studies should be included alongside RCTs, to which I definitely concur.I was pleased with myself because I came with two matters I wanted to raise, and was able to get both points across. LINKS: I think at the end of Reviews there should be 'Links', or references to other reviews.

a) Asthma and eczema together is often present in people therefore just a line to say, at the bottom of an Asthma Review - See other Reviews concerning eczema. Cross reference the eczema ones as well. After all, often steroids in different forms are used for both complaints.

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b) Similar to above: If a drug is a wide spectrum drug under review. Under LINKS it could be mentioned giving a reference so the reader could go to a general web site to find out.

RESEARCH: I brought this up at the Airways Meeting that although our Review (Speleotherapy for Asthma) had been on the Cochrane Library since 1999, I had never had a single criticism or comment (I am the lead person). Our Review states that more research is necessary... but there is no way that the research is ever promoted to happen. Someone must have been listening to me. Airways have been contacted as a RCT at Wieliczka Salt mine Sanatorium, Poland is likely to start shortly. I tried to obtain money from the EU under their 'Copernicus programme', for the Jeggellion University, Krakow to run a trial some four years ago but as the site is inland and the EU were only giving money to 'seaboard' sites, it was turned town. If I had not come to the Colloquium, I would not have had this feed back.

One issue 'Mediation' was well covered by Gill Gyte (Consumers), a subject I am also interested in and most important. With the advent of e-mail some people do not stop and appraise a situation and 'cool off' before acerbating a situation by reacting immediately. Attitude and using a calming phraseology is recommended.

Dr Chanpen ChoprapawonDirector, National Institute for Brain-based Learning, ThailandMy expectation before attending the Colloquium was to get more information about main and important knowledge regarding health issues in order to publish these important findings in Thai language and distribute to the public through different channels, eg. magazines, radio broadcasts and sometimes press release. I found some of what I expected but not all, and just realized that there is no easy format for the consumers, especially in non-English speaking countries like Thailand. One best thing that I got was the document from WHO-Euro-HEN Project (www.euro.who.int/hen). These documents (several issues) were carefully synthesized and written in easy way for the policy maker and consumer, I think if we want to make use of all reviews of The Cochrane Collaboration we need this kind of document circulated by web and newsletter. Several topics in the Colloquium were not useful for the consumers, e.g. method of the review, and difficult to understand for lay people. If we need to

strengthen the consumer network we may need special sessions to inform and educate consumers about the importance of the methods and critical appraisal. I suggest organizing workshops (intensive workshops) for the consumer in topics of interest, eg. I want to know how can I make use of all reviews for my consumers in Thailand (I can’t get any answer from the meeting, my idea is just the same as before I attended), which review is the best to use as reference. When 10 years have passed, the CC must grade the results and let the network know

the quality of the reviews, as the consumer will use them and cannot check whether they need to be careful to interpret the results.

Katie LeBlanc, Inflammatory Bowel Disorders Group, CanadaIt was truly a pleasure to attend the 12th Annual Cochrane Colloquium in Ottawa this year. This was my first experience at a Colloquium, and I was very impressed by the training techniques, professionalism, amount of information available, inclusive environment and leadership skills par excellence!The Introductory/Training Workshop on October 1 at the University of Ottawa was an excellent session for me as a consumer reviewer, to introduce me to the training program as well as to other consumers. Making Sense of Scientific Evidence was a workshop held on October 2, for consumers and individuals collaborating with consumers. Amanda Burls presentation was exceptional! Not only did she deliver excellent and highly useful information, Amanda's enjoyment as a presenter was apparent and most delightful. It is always a joy to participate in a learning experience with a leader who truly enjoys her work. Her presentation was extremely valuable, interesting, well-organized and focused. The consumer review information is very gratefully received and is most helpful to me in assimilating information and preparing synopses for the IBD Cochrane Review Group here in London, Ontario. As well, information will be shared with the Crohns and Colitis Foundation, London Branch, monthly meeting, and for personal decision making. Consumer input is vital to the progress of the Collaboration. The best contribution we can offer to the public is to ensure that the information is understandable to the average consumer/lay-person.

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The summarizing and challenging of the medical terms by consumer translators ensures that the general public will benefit from clear and graspable abstracts.As a consumer reviewer I am interested in the application of Cochrane systematic reviews to patient care, personal decision making, and to health policies. The Cochrane Collaboration's commitment to improving health care in Canada and around the world was a vision of yesterday and has become a marvelous reality as we share the benefits of health care knowledge within our global community. As Robert H Goddard stated, "...for the vision of yesterday is the hope of today and the reality of tomorrow”.  Anne Lyddiatt, Musculoskeletal Group, CanadaI would, first and foremost, like to thank all of those who made it possible for me to attend this event. What a wonderful experience! Thank you.It is very difficult to summarize the experience as I am still trying to digest it. This was my first Colloquium and I have to say I certainly came away with information overload. I have copious notes to refer to as well as web sites to peruse. As a consumer, I appreciated the Friday and Saturday workshops and found them very educational and helpful. I know I will refer to and use the information and when doing future consumer work on reviews and their summaries.All of the plenary sessions were interesting and thought provoking. The workshops I attended (almost all were consumer oriented) were excellent in content and allowed for questions and/or interaction. The practical aspect of using an actual review as a work tool was extremely helpful – it sure pointed out many things I hadn’t even thought of when doing a review!!The oral presentations I attended were geared either to consumers or dissemination as those are my areas of interest and familiarity. Again, I gained new insight into both process and barriers.I am involved in investigating ways to disseminate information on Cochrane to medical students and residents and feel that some of the knowledge I gained at the Colloquium will be helpful in getting this initiative launched. As well, when I am doing advocacy work with politicians around arthritis & chronic disease issues I will add the importance and value of access to Cochrane reviews as one of my

points. Perhaps one day we will be able to use the Colloquium to announce that ALL of Canada, rather than just one province, has access to The Cochrane Library!Carol Sakala, Pregnancy and Childbirth Group, Consumer Coordinator for North America, USI had attended just one previous Colloquium, Baltimore in 1998. I have been committed to this

work since about 1987, when I learned about the work that Iain Chalmers, Murray Enkin and others were doing in my field. The week in Ottawa was very special, and the only drawback was the need to be selective among the abundance of opportunities in both formal sessions and meetings and informal connections.I now connect faces, personalities, and advocacy areas with many names I had come to know through emails, newsletters and websites. I appreciated the opportunity to get to know the two current consumer representatives on the Steering Group, among many others. Several events were helpful for this process: two CCNet entity meetings, a special dinner party at the home of Ann Qualman, and facilitating a small group at the Saturday morning critical appraisal skills workshop.The Pregnancy and Childbirth Group has had a pioneering role in the Cochrane Collaboration in many respects, including the progress we have made with consumer involvement in refereeing of protocols and reviews and our ongoing work to evaluate the Consumer Panel process and impact. I thus appreciated the opportunity to present results of the first phase of our evaluation at a session on consumer involvement. I was disappointed, however, that few non-consumers appeared to be attending the session, which I thought could have helped many Collaborative Review Groups strengthen their processes for involving consumers. I am more motivated than ever to get the positive results of our evaluation out to a broader audience, as I believe that we are making history with both involvement of consumers in this process and a new and innovative way to strengthen the quality of health and medical research and help ensure that we meet the needs of those who receive services.It was of great value to hold several face-to-face meetings with other Pregnancy and Childbirth

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Group Consumer Coordinators, to meet with members of the Pregnancy Group and to attend the U.S. Contributors meeting. I found the quality of the workshops to be excellent, and the ones I attended have very practical application to my ongoing work as Director of Programs at the Maternity Center Association. Two events during the week were particularly moving to me. First, the passion for resisting the fact and appearance of commercial influence displayed in the intense discussion at the end of the Cochrane Collaboration Annual General Meeting, despite the costs and challenges involved in taking this position, reaffirmed that this is a very special organization that understands its unique and special place in the biomedical world. Second, I will never forget the sight of people from all continents dancing together and enjoying warm and respectful personal and professional relationships at the farewell party in the dramatic hall of Northwest Coast totem poles at the Museum of Civilization. It is wonderful to be involved with an international community that works so well together and is making such a positive contribution.Other highlights were working together in the ‘balance sheet’ session to create a model for a full accounting of known effects of interventions, hearing Ellen Hodnett present in a general session about the development of a review in which I participated as a co-author representing consumer concerns, and becoming updated on many projects through the posters and presentations.Back in my job at the Maternity Center Association as director of the long-term national Maternity Wise® program to promote evidence-based maternity care, I have welcomed the continuing resources of the Cochrane Collaboration (abundance of new and updated reviews in 2004 Issue 4 of The Cochrane Library and online release of Reproductive Health Library), consulted Cochrane Reviews for various purposes, continued Consumer Panel work, created my next column on Current Resources for Evidence-Based Practice, worked on "translating" results of systematic reviews for three new "Maternity Topics" for consumers on our website (www.maternitywise.org), provided feedback from a consumer perspective on a draft federal evidence report on episiotomy, and so forth. Our program could not exist without the groundwork and resources of the Cochrane Collaboration, and this year's Colloquium provided an opportunity to strengthen our partnership with the Collaboration,

build both new and established relationships, and connect with many exciting developments in the rapidly evolving world of evidence-based health care.Fiona Tito Wheatland, Consumers and Communication, Metabolic and Endocrine Disorders Groups, Australia

It has been a difficult couple of years with the problems inside the Network, so we were able to give each other real spiritual support at the Colloquium, and take steps forward together in a new direction. Working on the idea of becoming a Field was a good process, and one supported by everyone at the meetings. I felt sufficiently reconnected to agree to sit on the organising committee to help make this transition.At an intellectual level, I found the workshop run for consumers on the first day a real help. Sometimes as a consumer commentator or observer of research, I fell that there are things which are not right, but I sometimes feel that I lack the real skills to explain my concerns. My statistical skills were high school level and my understanding about “p” values and the different other terms used a lot in Cochrane discussions was not really grounded in reality. I don’t think I have ever actually understood why we took account of results where the “p” value was less than “.05”. Amanda’s workshop helped me understand what it meant in a real way. Working with others from other countries on what the research said and why you needed to specify what you were looking for BEFORE you started became really clear to me, and I think it will make me be a better commentator on reviews.I found the sessions in the morning excellent, and the speech from the Doctor from Medicines Sans Frontieres, Dr James Orbinski, very inspiring.I found the Meet the Entities session really good to make new contacts in other review groups that I have an interest in.Having attended a few Colloquiums now, I feel that there is a bit of a “gap” between the beginners stuff and the heavy end of town. I am actually getting beyond the introduction to Cochrane material, and while I know its REALLY important to have it, I would quite like more opportunities to work at a

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slightly higher level, without having to go to highly technical sessions which make me feel really ignorant. I think there is a gap in what’s available, and yet this is really important if we are to build on the slowly acquired skills that people who stick around in Cochrane have, particularly where they are consumers.I hope to run a workshop in Canberra for consumers who are interested in becoming involved in a Cochrane Review Group, using some of the lessons I learned from the Colloquium.

Nete Villebro, Anaesthesia Review Group DenmarkThe schedule was great and easy to follow and The consumer events were very well prepared and full of really good discussions. All the consumers who was gathered at Ann Qualman’s place was a great opportunity to meet for active consumers and for some of us who are organizing the consumer comments Some ideas for the future: it would be really good to have a consumer coordinators meeting and strategic discussions about consumer input to the reviews - I think there still is a need for making consumers input better and translated into making the reviews relevant to consumers.I would like to have a more general discussion among consumers of the topics that are discussed again and again – and to find a way to present these – and to find out how co-editors and the steering group want to have consumers involved, and how they want to reply to the wishes of the consumers. We must be very aware of the risk of involving consumers as a golden (rubber) stamp, and a core issue in Cochrane if they do not have influence – then it becomes a pseudo (token) involvement. We have to work for more consumer orientated outcomes in the reviews – even they make it more difficult to do the reviews.I would like to work with a data collection form for information from the review to develop the synopsis from. I would like the reviews to present the statistics in a way that has easy to understand figures for consumers and that it did not need a new ‘translation’.

I find the meetings so stimulating for developing consumer involvement in the whole Cochrane Collaboration.Sara Yaron, Breast Cancer Group, Israel I enjoyed and find it useful, the way it (the Colloquium) was organized.I got the opportunity to improve my skills and I'll implement my knowledge in many ways and for many other consumers. Examples: 1) Reading

medical research articles with groups of other consumers, especially breast cancer consumers, which I'm involved with. 2) Translating and writing synopses for consumers, and publishing them in consumer's newsletters. 3) To improve other consumers skills to read medical articles in order to help them to get better decisions. 4) to encourage other consumers to check their medical decisions, to ask questions, and to be much more ‘critical’ toward the doctor's suggestions, which is still very relevant and actual in my country.5) Encourage and empower me, as an active consumer, advocate, co- chair of the Israeli breast cancer coalition, and involved in all possible activities, in order to raise awareness to this diseases.6) I'm encouraging other people to join me to my handsearching activity for the breast cancer group.Suggestions:1. I would like to have special meetings for all consumers, ‘sharing’ the same diseases, although they are involved in different entities within the Collaboration. For example: I'm involved in the Consumer Network and the Breast Cancer group. There was no meeting for all breast cancer consumers together with the breast cancer group, and there were a lot of them, unfortunately. The meeting between the entity and the consumers, all around the world gives a lot of power, knowledge and feeling of solidarity. 2. I would like to suggest having more practical workshops, like this that was provided by Amanda (Critical Appraisal), and the one that was provided by Silvana and Liz (review synopses).

Amy Zelmer, consumer contributor to many review groups, AustraliaSince I live in a small regional city in Australia and normally am confined to e-mail participation, the

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opportunity to meet with other consumers and with the representatives of various entities was literally priceless.  I had a very busy few days but am sure that the human contacts which I was able to establish will assist materially in my understanding the various Cochrane activities and in making my participation more effective. I was able to attend the following activities:Introductory sessions - (Friday evening Oct 1st and Sat morning Oct 2nd) -‘Workshop for consumers and individuals’ - an excellent workshop which provided useful insights in understanding both conference presentations and the review process.  I was also impressed with the number of other consumers present and the variety of points of view which they represented.‘Meet the Entities’ - perhaps the most useful session for me.  I have been providing comments to several entities (heart, ENT, Acute Respiratory, Newsletter, Skin, CCNet and Injuries). I was fortunate in being able to have three conversations with other consumers at the (Welcome Reception) who are working in semi-isolation and have realised how fortunate we are now to be able to use the internet.All in all an excellent, if exhausting, gathering.Since the next Colloquium is scheduled to be held in Melbourne, I look forward to being able to make my own way there and hope that other consumers from far away will have the opportunity to join us in Melbourne. 

Mingming Zhang, Consumer Coordinator for the Chinese Cochrane Centre, Breast Cancer Group, one of two CCNet representatives on the Steering Group Monitoring and Registration Group, ChinaThis time I had an especial feeling for our CCNet. I met my old consumers and got to know many new consumers. Sitting at the same table or being invited to our consumer’s home to get together or having consumer meetings, I have experienced that CCNet is like a big friendly and intimate family for me in which we are like sisters and brothers! We are people from different parts of the world, because of CCNet we have been brought together to become Cochrane consumers. Thanks to CCNet I was provided with an opportunity to have an oral presentation where I learned a lot from each other. All of us found that what I have done in China on the consumer issue was totally different from others. I was happy to share ideas with each other. As I understand there is still a long way for Chinese

consumers to get involved in the Collaboration comparing with the western countries. There exists a great gap between developing and developed countries in consumer involvement. Still as a Chinese consumer representative, I will try my best to make as much contribution as I can for CCNet through organizing a team of professional consumers to provide consumer comments for review groups, to promote wide participation in the Collaboration in my future work.

The first time I have been invited to be a member of the Thomas Chalmers Award Committee. I learned from others about the process and do the pre-selection and onsite selection abstracts and oral presentation. Though it kept me busy during the Colloquium, I am pleased to do anything to benefit the Collaboration.In addition, as a reviewer in the breast cancer group, the Colloquium provided an opportunity for me to meet with the staff in this group and I attended some related workshops that help and support me to finish my review.

Kathie Clark, co-director of the Canadian Cochrane Centre and Network sent letters out to many of the health consumer organisations in Canada to inform them of the Colloquium and to invite them to the colloquium, with some sessions free of charge. Mary was a representative of the Canadian Arthritis Society Patient Advocacy Group (CAPA).Mary Brachaniec, Musculoskeletal Group, CanadaAfter joining a Research Committee for a Canadian Arthritis Society Patient Advocacy Group (CAPA) last Spring I was invited to become a Consumer Peer Reviewer for the Cochrane Musculoskeletal (MSK) Review Group. I have contributed to three reviews so far and this has been an educational and empowering experience. I feel that my input has made a difference in the final version of the Systematic Reviews with regards to readability, relevance to patients and identifying priorities for future research.I was honoured to represent CAPA at the Cochrane Colloquium in Ottawa. Hundreds of researchers, health care providers and consumers from around the world gathered to discuss how to ‘Bridge the

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Gaps’ in synthesizing research results and bringing this information to the health care providers and patients who need it. I was pleased to find that the Cochrane Consumer Network (CCNet) consists of over 300 consumer contributors around the world interested in a full range of health areas. The CCNet has many resources available to assist consumers such as myself. I learned that participating in the peer review process is one of the many roles for Consumers within the Collaboration. Identifying and prioritizing research priorities/questions, ensuring that money and resources are well allocated and making sure that outcomes most important to receivers of health care are measured are examples of Cochrane Consumer involvement.I came to appreciate that although we face challenges in health care and research in Canada, countries in the Third World face far more serious difficulties and barriers to basic services. I understand that the manner in which research results are presented influences readers’ perception of benefits and harms of treatment. Statistics may be presented in ways that make treatments look safer and more effective than they really are. It is vital that statistical evidence and research summaries are presented clearly and consistently. I learned that not all medical treatments are based on solid evidence and groups such as the Cochrane Collaboration are working to improve this. It is up to both consumers and care providers to demand that evidence based medicine becomes the rule in health care. We deserve no less.The Canadian Patient Arthritis Community was well represented at the Cochrane Colloquium - much credit to Ann Qualman, Anne Dooley, the CAPA Steering Committee and the Arthritis Society for creating a milieu in Canada that strongly values input from Arthritis Consumers.

A CCNet article entitled ‘Online with Evidence’ was in the December issue of Cochrane News (No 32), which you can download from: www.cochrane.org/newslett/.It concludes with quotes from firstly Mingming then Mary: “As I understand, there is still a long way to go for Chinese consumers to get involved in the Collaboration compared with developments in western countries. There exists a great gap between developing and developed countries in consumer involvement. Still, as a Chinese consumer

representative, I will try to contribute as best I can.” In Mary’s words, “I came to appreciate that although we face challenges in health care and research in Canada, countries in the Third World face far more serious difficulties and barriers to basic services.”

  Developing summaries of reviewsThe guidelines for developing synopses are under review; they are likely to be renamed and ‘plain language summaries’ is one term that has been put forward. It is timely, therefore, that CCNet is making a commitment to ensure reviews in The Cochrane Library have a valid synopsis. One part of this undertaking is to help review groups and their authors with synopses for reviews that are new or being updated - on request from the review group. Many consumers already help their review groups in this way.

The second equally important component of the project is to develop synopses for reviews that are already in the Library.

Both undertakings benefit from a system where prepared synopses are checked by another consumer before being sent back to the review group – for format and language.

If you would like to be part of the team or feel you have something to offer please contact us at E-mail: ccnet-contact@cochrane.de

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This December issue is the fourth CCNet newsletter for 2004. The editor has worked within her means to ensure that information is presented accurately.On behalf of the Coordinating Team of CCNet we thank all who have contributed to the newsletters. We hope that you will continue to do so and that others feel encouraged to add their contributions too.The newsletter sets out to be an informal but interesting and informative publication. In a similar vein, any thoughts and ideas as to ways of improving the newsletter are welcomed.To all in and around CCNet have a safe and precious time during the end of the year activities. We wish that 2005 offers you many joys and positive opportunities!

 

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