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The people have the right and duty to participate individually and collectively in the planning and
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implementation of their health care (WHO statement, 1978).
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Contact e-mail:
E-mail discussion list:
Web address: http://www.cochrane.org/consumers
Contents Page
Welcome address by Silvana Simi 1
Report by the Steering Group representatives 2
12th Cochrane Colloquium: Ottawa 2-6 October 3
What’s Happening 3
A question of over-dosing – an interesting article 5
Governance issues 5
CCNet position on corporate sponsorship 6
‘Ciao’ from Silvana Simi of Italy
- an Italian representative
This year the mid-year Steering Group meeting was held in Italy to have the opportunity to also celebrate the 10th anniversary of the Italian Cochrane Centre based in Milan. The Centre is active in the field of healthcare research, training, education and editorial initiatives while promoting the culture of independence and transparency of research.
The most important event of the celebration was the workshop on ‘Evidence-based Health Care and The Cochrane Collaboration’, aimed to present some of the achievements of the Centre under the direction of Alessandro Liberati and to present how Cochrane activities can improve both clinical practice and citizen/patient involvement in healthcare decisions.
The ‘Consumers session’ had several presentations dealing with the pitfalls of medical journalism, the effects of the media on consumer behaviour, consumer involvement in research prioritisation while the two Cochrane consumer representatives presented (Janet Wale and myself) ‘What is stopping evidence-based practice? - a role for the Cochrane Consumer Network’. We talked about the importance of being an informed consumer, and a Cochrane consumer, stressing that consumers:
· have the right to have their will respected;
· bring ‘to the table’ their perspective, which comes from being at the receiving end of health services;
· can determine priorities for health research questions;
· can help to make information more accessible;
· can build patient-centred medicine.
This was my last mid-year meeting as at the Ottawa Colloquium I will have completed my term of office as a consumer representative on the Steering Group. I took the place of Hilda Bastian three years ago and this has been a great responsibility for me due both to Hilda’s commitment to consumer involvement in the Collaboration and the evolving role of the Consumer Network.
During this time, I have come to focus better on how important evidence-based information is in order to achieve a true and critical consumer involvement in any step of health care. Only in this way will health services grow in democracy and adapt to people’s individual needs.
Report by the Steering Group representatives
Silvana Simi and Janet Wale recently attended a 2.5 day meeting of the Steering Group in Bergamo, Italy (29 February to 2 March). This meeting was preceded by a one day symposium held by the Italian Cochrane Centre (Friday 27 February) where we both contributed, presenting talks on consumers within The Cochrane Collaboration and the pressures from indirect advertising to health consumers.
An important point on the Steering Group meeting agenda which was of particular interest to the Cochrane Consumer Network (CCNet) was the ‘Conflict of Interest’ discussion, based on the feedback (156 items to read) from the circulated paper written by Jim Neilson, Mike Clarke, Kathie Clark, Mark Davies, Davina Ghersi and Steff Lewis (19 December 2003). The decided policy is now being developed and will soon be available. Other items that stimulated useful discussion were the Wiley & Sons version of The Cochrane Library (preceded by demonstrations of the site), and the current situation with synopses. Future plans for synopses were discussed and issues identified are to be taken on by a sub group of the Handbook Advisory Group. CCNet has a crucial role to play and we are taking this further as an important project that its members can contribute to.
We appreciated the very warm hospitality of our Italian hosts and worked very hard and effectively despite the bad coffee and absence of drinkable tea at meeting time. The only time for sight seeing was on the Saturday when we trooped around the icy Bergamo Cittá Alta. This is an ancient walled city of narrow streets, interesting buildings and shops frequented by the local people as well as tourists.
Silvana Simi & Janet Wale
Keeping informed
The minutes of the Steering Group meeting and the policy on ‘Conflicts of Interest’ will be circulated on the e-mail discussion list when they become available. We encourage people to join the e-mail list so that you are kept informed. To do so, send an e-mail from your normal address to with ‘subscribe’ in the subject line. The list is moderated and to join will not greatly increase the number of e-mails you receive.
Maryann Napoli of New York, and others, keep us informed of recent publications that are of concern to people in CCNet through this email-list.
Report of discussions with Cochrane Centre Directors
On 26 February, Janet Wale took the opportunity to present a CCNet paper to the Centre Directors’ meeting in Bergamo. The paper put forward developing plans for the future of the Consumer Network. The presentation stimulated a lively and very useful discussion. A number of Centres are taking an active role in encouraging consumers to participate in The Cochrane Collaboration. We are much encouraged by the friendly, cooperative spirit experienced, which emphasises the need to work closely with centres in true collaboration.
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12th COCHRANE COLLOQUIUM
"Bridging the Gaps"
October 2-6, 2004
Ottawa, Canada
www.colloquium.info
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Ottawa, 2 to 6 October 2004
Plans for the next annual colloquium
Applications for Consumer Stipends close on 10 May. Successful applicants will be notified by 7 June. To be eligible, people are required to be already involved with The Cochrane Collaboration as consumers and to have letters of support. Application forms are available at http://www.colloquium.info.
Consumer workshops are under development. For this and future colloquia, CCNet is putting its efforts into four key workshops - as part of its training and development program (CCNet endorsed workshops). We are also hoping to support a workshop on ‘decision aids’ for patients, by a key researcher in this area.
The Annual General Meeting will be held during the colloquium and is tentatively set for the afternoon of 5 October.
What’s Happening!
Local Cochrane meetings
Cochrane Centres are located in strategic positions across the world. Many centres are now planning their local Contributors’ Meetings. These meetings generally have sessions aimed at consumers and are a good way of finding out more about The Cochrane Collaboration.
10th Annual Meeting for UK Contributors to The Cochrane Collaboration, Edinburgh 25 and 26 March 2004: 'Effectiveness and beyond: What should we review?'Register at: www.cochrane.co.uk
Following on from a successful consumer training day in London last year, we are running a consumer training day in Edinburgh on 24/25 March 2004, immediately ahead of the UK Contributors meeting. Contact Gill Gyte at e-mail: if you are interested.
The Cochrane Haematological Malignancies Group are running consumer workshops on 19/20 March and 2/3 April 2004 in Cologne. The workshops are funded by the German-Cancer-Aid, so that especially consumers with any kind of cancer are invited. The workshops are free and we can pay travelling expenses and accommodation. The workshop language will be German. For more details see www.chmg.de/html/deutsch.htm
US Cochrane Collaboration Meeting April 1 and 2, 2004, registration available online at www.cochrane.us.
The two-day meeting is hosted by the US Cochrane Center and will be held on Brown University campus in historic Providence, Rhode Island. The theme of the meeting is "Building the Foundation: Creating Greater Awareness and Use of Evidence-based Health Care." This meeting is open to all those interested in learning more about The Cochrane Collaboration as well as
those already involved as reviewers, editors, handsearchers, consumer advocates, policymakers, funders, and staff. Plenary sessions will focus on funding strategies, building partnerships, and knowledge brokering.Workshops include hands-on demonstrations of RevMan,getting the most out of The Cochrane Library, statistical methods for meta-analysis, and consumer involvement.
A poster session will display the ongoing work of US Cochrane entities and of collaborating groups. For more information, contact or
Continental European Contributors Meeting, 12th to the 14th May, 2004, the Dutch Cochrane Centre will host the next annual meeting, to be held in Amsterdam, the Netherlands. This meeting is directed at members of Cochrane entities located in continental Europe. Contact the Dutch Cochrane Centre for further information by e-mail: .
The Australasian Cochrane Centre is holding its 4th Annual Contributors’ Meeting in Sydney June 17th to 18th, 2004.
Consumer workshops will be held on both days and are entitled: Consumers in Research – systematic reviews from a consumer perspective and Understanding the results of Cochrane
reviews from a consumer perspective. Contact Janet Wale at for further information. The program is available at http://www.cochrane.org.au/contrib/index.html.
Cochrane newsletters
The Cochrane Consumers and Communication Review Group newsletter (#10 Jan 2004) is at: http://www.latrobe.edu.au/cochrane/news.html
The South African Cochrane Centre has a December, 2003 newsletter. If anyone would like a copy please contact: (I have one spare copy).
Previous issues of the CCNet Newsletter and also Cochrane News can be found at:
http://www.cochrane.org/newslett
Consumers wanted
The Cochrane Dementia and Cognitive Improvement Group is looking to expand its consumer network outside of the UK. If you know of anybody or any organizations who have an interest in Dementia and Cognitive impairment and Cochrane in Australia and elsewhere could you please contact: The website is http://www.jr2.ox.ac.uk/cdcig/ “which outlines what our scope is and the topics that we have got protocols and reviews of”.
The Cochrane Neurological Network would also like to hear from new consumers:
Other information
Two FREE seminars, Thursday April 29 and May 6th, 2004 in Toronto, Canada held by Ovarian Cancer Plus. These seminars are open to all including cancer survivors, family, friends, medical professionals -all those involved or concerned with expanding knowledge of healthcare needs. Speakers include Kathie Clark of the Canadian Cochrane Centre. For further information contact Sandi Pniauskas at:
Consumer Synopses – please respond
Synopses or summaries?
We would like to hear your views on the most suitable title for that part of the review that gives a brief summary of the review in plain language – for consumers and non-specialist readers!
Furthermore, could consumers who regularly contribute to the writing of synopses in their review groups please contact Janet at
The Cochrane Library
The Cochrane Collaboration Steering Group met with representatives from Wiley on 29 February 2004 and discussed the finalisation of the Wiley
InterScience version of The Cochrane Library. Further work and testing is taking place, and an announcement about the formal release date will
be made when this stage of the development process is complete. At that time, the latest test version will be made available on the internet.
The Update Software version of The Cochrane Library continues to be available and is anticipated to be available with the publication of Issue 2, 2004, as a minimum. A period of overlap with the Wiley
InterScience version of The Cochrane Library and the Update Software version is planned to allow for a smooth transition for users.
Deborah Pentesco-Gilbert, Managing Editor, The Cochrane Library, John Wiley & Sons Ltd
CCNet web site
Work is underway on the consumer pages on the main Cochrane web site and can be found at http:/www.cochrane.org/consumers/homepage.htm. We would appreciate your feedback and ideas on what is already there.
You will find it interesting to see the entire web site and what is there, including free abstracts of Cochrane reviews and What’s New Digest. The web site development is made possible by the time and effort of over 50 individual
contributors and web advisory committee members, and with financial support by the German Cochrane Centre, the University Hospital Freiburg, and the Deutsche Krankenversicherung.
A question of over-dosing
In February 2004 Maryann Napoli distributed a very interesting article from the Los Angeles Times using the consumer e-mail discussion list ().
The article featured a former medical practitioner who is very concerned about over-medication and the high doses of drugs that the pharmaceutical companies and subsequently many doctors are promoting.
Jay Cohen could no longer practice medicine when he contracted a rare vascular disease
(erythromelalgia) and an autoimmune connective tissue disease that caused him great pain. During his career as a doctor he had become very concerned about the doses of drugs recommended by industry. This was through his own experience with prescribing the anti-depressant drug Prozac. Lowering the dose given to a patient with mild depression could prevent the sensitive patient from becoming psychotic, ‘crawling up the wall’. He searched and found research that confirmed the drug was effective at lower doses that the one recommended – “….If you don’t give me the information to do my job right, how can I protect my patients?” he stated. Now, he continues to research medical studies and patient experiences and has formed a non-profit corporation called the Center for the Prevention of Medication Side Effects. His purpose is to identify other drugs where the recommended dose may be too high.
Seeking registration for a new drug is a costly and time consuming process, which may mean that industry concentrates on the higher dose levels in order to ensure drug effectiveness in clinical studies where the drug is measured against a placebo (inactive) medication. These pre-registration clinical studies involve participants who have no additional ailments to the one for which the drug is to be used and who are within a restricted age range; neither too old or too young. Indeed, how often are potential drugs tested in the elderly or in children?
A criticism can also be directed at consumers as Cohen points out in the interview for the article that patients love quick results with medication, which doctors are well aware of. Treatment is, therefore, started with high doses rather than building up to an effective regime. The high doses are more likely to work but with an increased likelihood of side effects; mild diarrhea, for example, or something more serious. Doctors often lack basic knowledge of how drugs work and this makes them vulnerable to pharmaceutical companies and the information they provide. This is another argument for consumers to be well informed and to participate in shared responsibility for health care.