A Hello from Godwin Aja of Nigeria

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The people have the right and duty to participate individually and collectively in the planning and implementation of their health care (WHO statement, 1978).

Our contact e-mail:

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A ‘Hello’ from Godwin Aja of Nigeria

Bravo to CCNet

It was a great opportunity to meet with other members of the Governing Council in Barcelona and the Consumer Network membership. Thanks to the Cochrane Collaboration Steering Group for providing funding for Liz and I to participate in the crucial meetings that have significantly advanced the course of the Network.

The Cochrane Consumer Network has done so much to involve developing countries and indeed Africa in the overall affairs of the Network, in line with the general principles of The Cochrane Collaboration. So far, there have been African representations on the Steering Group of The Collaboration and the Governing Council of the Cochrane Consumer Network. And there is strong indication that more African consumers would be involved in the coming year.

While attempts are being made to get more consumer ‘perspective to the high quality Cochrane systematic reviews…across a wide range of health care topics’, dissemination of existing Cochrane Reviews to developing countries through effective traditional community channels should be given due consideration. The problems of low literacy level and poor access to internet and other resources call for more meetings and workshops not only at the colloquia. By creating the fora for community-based regional training plans, increased participation and widespread involvement in the development of appropriate dissemination mechanism may be readily achieved.

The recent proposal by the UK Consumers to train at least three African consumers in 2004 is commendable. This is a welcome development that would provide African consumers with the tools needed to support similar training in Africa and indeed a unique opportunity to learn how the UK Consumers are organized. Thank you Gill and the other UK Consumers for this new and exciting partnership!

Editor’s note: A total of four members of the Governing Council wore Nigerian dress (women assisted by Nelly Orifa) for the final evening of the Colloquium. We thank Godwin for this opportunity (no photos).

The Cochrane Consumer Network in Barcelona, 2003

The XIth annual Cochrane Colloquium was an important time for the Cochrane Consumer Network (CCNet). Only some ten months after the elected governance structure was instigated,we had a lot to discuss, important decisions to make, workshops and meetings to run. The positive, sharing attitude of consumers present affirms intent by the Consumer Network to move forward in broadening and empowering consumer participation within The Cochrane Collaboration.

Barcelona is a vibrant city. So too were the organisers of the colloquium, always ready with a smile. Early in the week, we were faced with navigational challenges as meetings and sessions took place in different settings. The personal guides were, therefore, very much appreciated and it was wonderful to experience at first hand the diverse architectural gems that make up Barcelona. The busy colloquium program provided a feast of sessions that were of interest and relevance to consumers.

The initial part of the week was devoted to Cochrane issues that included commercial sponsorship; use of observational and controlled clinical trials - to alleviate the rigid stereotype of the randomised controlled trial participant; use of qualitative data in systematic reviews - to provide a contextual, identifiable face to the data within reviews kept our attention. Meetings and workshops were also concentrated in these few days.

The latter part of the week was more general and considered The Collaboration in a global sense. Of particular interest to consumers were the clinical and health care orientated parallel sessions. Three to four speakers with divergent backgrounds spoke in context. Different cultural and geographical aspects, related review groups, training and working environments spoke on the topics from their own perspectives. Attending these sessions, one also became aware of the wide number of countries represented by consumers who were present. This is an important factor for CCNet. We intend to build on our strengths by provision of effective communication and support particularly through the consumer e-mailing list and the further development of the Nordic consumer web site as it moves to the main Cochrane web site, as in the next few months.

Mingming Zhang of China writes

I was very pleased to meet all the consumers at the Colloquium this year. Whether they were new or ‘old’ - consumers I had met before, I felt like we were sisters and good friends. I am from China and as a consumer representative from a ‘developing country’ I understand that it is not very easy to have this kind of opportunity to attend this annual event. So, I value very much the time to share ideas, attend different kinds of workshops and meet with different Cochrane entities. I attended all the consumer meetings, workshops and parallel sessions I could and have learned a lot.

Firstly, I am very happy to see the new Consumer Governing Council in position, to meet them and to know who they are. I found that what they have done is, in particular, to make great efforts to involve all consumers working within The Collaboration. I would like to express my thanks to those who have devoted much of their time on this work, to set the ‘wheels in motion’ to move forward, to make the Cochrane consumer work transparent and in a structural way so as to make sense for us. I can imagine how hard they have worked in the past months.

Secondly, as a ‘professional consumer’, I have often thought about how to help other Chinese consumers become involved in The Collaboration. Some of the workshops and presentations at the Colloquium offered suggestions and provided me with ideas.

I am faced with many difficulties; language barriers, cultural differences, technical communication problems, availability of facilities, lack of funding and support. My future work will focus on identifying consumers and organizing a group of ‘professional consumers’. This is the first stage to initiate a consumer perspective in this kind of work based on the reality of the situation, which is the difficulty of explaining what a consumer does in The Cochrane Collaboration.

Finally, I hope to make more and more contributions to the consumer work within The Collaboration as I enjoy talking and working with consumers.

Mingming received a consumer stipend to attend. She uses the term ‘professional consumer’ as we heard it used a number of times at the Colloquium, to describe what may otherwise be called a consumer representative or advocate.

Wiley & Sons and The Cochrane Library

Alexa Dugan, Associate Marketing Director of John Wiley & Sons came to talk to consumers present at an afternoon of meetings on the first Sunday of the Barcelona Colloquium (26 October).

In an informal and friendly meeting, Alexa showed us some of the press releases on Cochrane reviews that John Wiley & Sons have developed. We were impressed with how clearly the information was presented and are happy to say that future releases are being made available through the e-mailing list . Copies of existing press release clippings that arte of particular interest to you or your group can be obtained by contacting Alexa. Give your name and address so that she can post them to you.

E-mail address:

Topics being covered:

Formulas containing hydrolysed protein for prevention of allergy and food intolerance in infants

Smoking cessation for the secondary prevention of coronary heart disease/Critchley

Impact of tobacco advertising and promotion on increasing adolescent smoking behaviours/Lovato

Inhaled long-acting agonists for stable chronic asthma/Walters

Continuous versus intermittent beta-agonists in the treatment of acute asthma/Camargo

Hospital at Home for acute exacerbations of COPD/Ram

Combined spinal-epidural versus epidural analgesia in labour/Henderson

Antiplatelet and anticoagulation for patients with prosthetic heart valves/Little

Topical fluoride (toothpastes, mouth rinses, gels or varnishes) for preventing dental caries in children and adolescents

The Information Management System (IMS) for The Cochrane Collaboration

Monica Kjeldstrøm of the Nordic Cochrane Centre kindly informed consumers present at the end of the Special General Meeting, the system that has been developed to manage ‘information’ within The Collaboration. This includes reviews going onto The Library, entity Modules, a Contact database for entities, reviewers and consumers – that is accessible only by authorized people. It is the responsibility of the Consumer Network to ensure that our Module and Contact Database are up-to-date (work in progress at present).

Governance

Annual General Meetings

The Annual General Meetings of the Cochrane Collaboration Consumer Network Incorporated and CCNet were held on Wednesday 29th October. The minutes are at the end of this Newsletter.

A special thanks to Kathy Mott for the role she has played in the Cochrane Consumer Network

On 24th November, 2003, Kathy Mott resigned as the Public Officer for the Cochrane Collaboration Consumer Network Incorporated. It is a requirement of the incorporated association that it has a Public Officer, who is resident in South Australia. Steps are under way to find a replacement.

Thank you very much Kathy for your hard work in and for the Network!

And thanks to the Cochrane Collaboration Steering Group and the Secretariat for enabling the Cochrane Consumer Network Governing Council to meet in Barcelona.

Cochrane entity updates

News from the Haematological Malignancies review group, Cologne, Germany

It is with sadness that we say goodbye to Sabine Kluge. Nicole Skoetz, takes over sole responsibility as consumer coordinator in the new year. Sabine has decided to become a full time mother for her young son. We wish Sabine the very best but will miss her insightfulness and caring disposition at future colloquia.

We were pleased to meet Nicole in Barcelona and know that she will continue to develop further the role that consumers play in this review group, which has its own special problems because of the ill health of its consumers. E-mail address:

A revised stipend policy document under development

Claire Glenton of the Nordic Cochrane Centre, Norwegian Branch, has been working very hard to update and revise the Colloquium Developing Country and Consumer Stipend Policy document.

Consumers are considered for stipends on the basis of consumer contributions to The Collaboration and their contact with other consumers. The proposed policy gives both newcomers and well established consumers the opportunity to attend Cochrane Colloquia. It will be on trial for the 2004 Colloquium in Ottawa.

Training activities for consumers

The following Cochrane entities have run training sessions for consumers and consumer advocates in recent months:

Canadian Cochrane Network and Centre, November 2003

First experiences with a Consumer Educational Programme in the Cochrane Haematological Malignancies Group (CHMG): Nicole Skoetz

In November 2003, our first 2-day workshop for consumers took place in Cologne, Germany.Since the project is funded by German Cancer Aid the workshop was not exclusively restricted to consumers with haematological malignancies. Any consumer interested in being educated was encouraged to take part in the workshop, regardless of their specific diagnosis.

Fortunately we could provide financial support for the participants to cover their hotel costs and travel expenses.

The workshop was announced in various media (pamphlets handed out at patient conferences, personal contact to self-help groups, expanded website over a period of six months. Finally, a total of 14 consumers signed on. We are satisfied to get such a good response since The Cochrane Collaboration, as an institution and scientific concept, is fairly unknown in Germany, especially among consumers. Therefore, the workshop started with a general overview regarding the structure of The Cochrane Collaboration, followed by basic statistical methods to evaluate clinical trials. Then characteristics of critical appraisal were worked out. The workshop ended by peer-reviewing a Cochrane protocol.

Out of 14 consumers who initially documented their interest to take part in the workshop only 10 were able to attend the course. The remaining four patients cancelled because of an acute deterioration of their physical condition.

Overall general satisfaction was determined using a specially designed evaluation form. As a result of the workshop, each individual consumer intends to represent the patient-perspective in Cochrane protocols and reviews by peer-reviewing and is interested in attending the advanced workshop being scheduled for March 2004. At that time, a new basic workshop will also take place. The advanced workshop will deal with database searching and peer-reviewing a Cochrane review. The workshop will be held in German and further information is presented on the website or can be obtained by phone (+49 221 71077021) or e-mail ().

Future meetings planned include

UK Cochrane Centre, Edinburgh, March 2004

Registration is now open for people who wish to attend the 10th Annual Meeting of UK Contributors to The Cochrane Collaboration. This meeting willtake place on Thursday 25 and Friday 26 March 2004 at the Edinburgh Conference Centre, part of Heriot-WattUniversity in Edinburgh.

Consumer stipends are available for consumers based in the UK or Ireland; applications need to be received at the UK Cochrane Centre by 9th January

2004. The consumer training workshop will take place just ahead of the UK Contributor meeting, on the afternoon of Wednesday 24 and the morning of Thursday 25 March 2004 - forms from:

Contact Caroline Rouse, Administrator of theUK Cochrane Centre, Summertown Pavilion, Middle Way, Oxford OX2 7LG

E-mail:

Continental European ContributorsAnnual Meeting in Amsterdam, 12-14 May, 2004

The first day is reserved for a workshop regarding the use of the new Information Management System

(IMS). Various workshops will be organized in the following two days. For further information contact the Dutch Cochrane Centre .

Australasian Contributors' Meeting in Sydney, 17-18 June, 2004

Preparation is underway for the 2004 Contributors' Meeting to be held in Sydney. The Cochrane Consumer Network is planning a consumer workshop during this meeting.

Middle East Transcultural Healthcare Discussion Forum is a location for comments, exchanges of views, postings on 'hot topics', links to resources, information about research proposals, conferences and associated events. The forum is not only restricted to health care and cultural issues about the Middle East and we welcome participants with an interest in cross cultural issues from any region.

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12th COCHRANE COLLOQUIUM
"Bridging the Gaps"
October 2-6, 2004
Ottawa, Canada

Cochrane Information

The latest issue of Cochrane News

Daren Spithoff, Editor, informs us that this is now available on theCollaboration web site at

Please download the main newsletter of The CochraneCollaboration to find out about news and issues affectingthe Collaboration, including: corporate sponsorship, freeaccess to The Cochrane Library, new Cochrane entities andthe Barcelona Colloquium (photos, highlights and more!).

Did you know?

Gill Gyte was presented with the Chris Silagy Prize at the closing session of the Barcelona Colloquium. Congratulations Gill! This prize is for contributions to The Collaboration in ways that are often insufficiently recognised.

Liz Whamond received the Queen's Golden Jubilee Medal in Ottawa in February of 2003. The medal is awarded to persons who have made a significant contribution to Canada, to their community, or to their fellow Canadians.

The Commemorative Medal for Her Majesty Queen's Elizabeth II's Golden Jubilee was created to mark the 50th anniversary of the accession of Her Majesty to the Throne on February 6, 1952.

Our ‘Highlighted Consumer’

Sandi Pniauskas of Canada writes:

“Whoops!” A ‘somewhat’ humorous approach on being a patient - consumer?

Just how many times can we say; “Whoops, I didn’t know that”? Of course this makes the broad assumption that you do want to know - know what? Where? How? And the bigger question is - When?

When I was first diagnosed with ovarian cancer I did not know what it was. “Whoops!” I didn’t know!

Within a year and a half, my sister was diagnosed with a different but, as it turned out, related cancer. I didn’t know about Hereditary Non Polyposis Colorectal Cancer (HNPCC) either. I felt that I had enough to do trying to learn about ovarian cancer, one cancer was enough. We were both in our 40’s - “Whoops!”

This scenario is not unique as there are many families affected with multiple cases of cancer. One cancer incident is more than enough but multiple cases? I was faced with a situation where information and research was limited and more importantly, scattered over many places. A little study here, a big study there, an opinion, an observation - ovarian cancer is an uncommon cancer, HNPCC less so. If I were a mouse, I would be in great shape!

Onto the internet……some good information, and some you asked yourself “you took up web space for that?” Some people refer to this level of activity as ‘information-seeking coping mechanism style’. Call it what you may, through my research endeavors I found The Cochrane Collaboration. My initial impression was that although this organization was internationally well-respected, it existed solely for scientists and researchers. That is until I read about the Cochrane Consumer Network and how I could actively contribute, in a manner which would make a difference. It also assisted with finding answers to the questions I was seeking. And all in a manner in which a person without a medical background, that’s me, could understand. You see, without me and without you, there is no research. Cochrane recognizes this. I initially thought that those involved with Cochrane would think I was stupid and I hesitated to give input. It was always on my mind that I had no medical background. It turned out that was my own personal bias. Our input is valuable and I believe that we are people first, although the geneticists would have us believe otherwise.