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Contents Page

Steering Group representatives1

E-mail list serve proposal; survey results2

What’s happening; Ottawa Colloquium3

About the Cochrane Haematological Group5

Information7

Governance8

VOTING PAPERS11

Welcome to the July edition of our newsletter!

Steering Group election

We commence with a very important task -This is to ask you to take part in the election of a Consumer Network representative to the main Cochrane Collaboration Steering Group. Silvana Simi (Italy) completes her term of office in October and is not standing for re-election. The two nominees are Godwin Aja (Nigeria) and Liz Whamond (Canada). Janet Wale remains as the second Network representative until 2006.

Voting papers, candidates’ personal profiles, election procedure are at the end of this newsletter.

Completed voting papers need to be sent to ClaireAllen please, by midnight BST (GMT +1 hour) on Friday 23 July 2004 (by e-mail is fine).Late results cannot becounted.The election results will be notified to all entities on Wednesday28 July 2004.Incomplete or disfigured voting papers will be ineligible forinclusion.

Report by aSteering Group representative

March to June is a busy time for members of the Monitoring and Registration Group (MRG), a sub-committee of the Cochrane Steering Group. This is the time when the group of elected representatives from the Steering group and co-opted members assess reports from each of the Cochrane entities. CCNet was represented by Janet Wale (Australia) and Mingming Zhang (China).

Janet writes: I was fortunate to be able to meet up and visit a number of CCNet members recently. I traveled to a conference in California USA, to attend a conference on assessment of outcome measures for musculoskeletal disorders, which was very instructional as I was part of a patient group to inform and support thework of healthcare professional and researchers.

From California I moved to the East Coast where Maryann Napoli and I spent time with Jane Nadel of the US Cochrane Center in Providence. We discussed the consumer advocacy project they are running there. It was luxury to have moved from sitting alone in front of my home computer in Perth, Australia to a most welcoming environment, access to an office, computer and lively discussion. We felt stimulated by the opportunity for interaction and discussion on the broad role of the Cochrane Consumer Network.

Following a rather cramped flight to Manchester in the UK I was able to meet up with Gill Gyte. The Cochrane Oral Health Group made a place available for us to sit and work again with a computer,smiling welcoming faces and plenty of cups of coffee. It was only after we had intensely applied ourselves to our agenda that we realized there were very comprehensive introductory packs for consumers sitting on a shelf behind us.

Then it was the MRG meeting in Oxford. Again Cochrane people put themselves out to make the MRG members feel welcome and to enable us to make good use of our time there.

It is a huge learning experience being part of a collaboration such as The Cochrane Collaboration and to have formed strong bonds with fellow consumers.

Thank you!

Another important consideration

Proposed more efficient use of the consumer e-mail list serve

The e-mail listserve, or discussion list, is a moderated e-mail site that passes through stringent and carefully updated virus checks. As the address is used at present, people involved in consumer participation within The Cochrane Collaboration may request to be on the listserve.

The Co-ordinating team of CCNet proposes that all consumers on its database (that is, all people receiving this newsletter direct from CCNet) are placed on the list, unless they specifically notify us otherwise by e-mailing .

The advantages of taking this step are multiple:

• privacy is maintained;
• e-mails are carefully virus screened;
• the workload in distributing and ensuring distribution of information eg the Steering Group elections is markedly reduced;
• you can receive information relevant to CCNet.

Another reason for taking this approach is that review groups and other Cochrane entities can readily contact you to ask for consumer involvement in their work.

At present, a number of groups ask for consumers to comment on a particular protocol or review. It may be that you yourself have experiences in this area or you may know someone and be able to peer-support them toprovide comments to feed back to the review group.

If we have a large pool of consumers who are part of the listserve then we can encourage Cochrane entities to enlist consumer input in this way. We would encourage them to put at a request twice if they are not successful in the first instance – because sometimes we think there may be someone better suited to commenting on a particular review.

If we do not hear from you before the end of July at then we will assume you are willing to be part of the list serve.

Report onresults from the survey sent out to CCNet members

In May 2004, we sent a brief e-mail survey out to the people on our database. A total of 53 people (of some 300) from a range of countries completed the survey. The first question asked was why people joined the Cochrane Consumer Network. The percentage of consumer members who joined because of their work was 65%. This was a similar numberto those who became involved because of, or also because of, their own or a family member’s health (61%). The overlap is because people were able to respond to both parts of the question. Similarly, 59% of respondents declared a general interest in health issues. Only 18.5% joined as caregivers.

To find out more about how consumers use and contribute to The Cochrane Collaboration, we asked if finding information from Cochrane reviews was important; it was for 56% of people. Some 70% contributed to Cochrane reviews, including commenting on reviews before publication. A significant number (44%) also contributed to review synopses. It is interesting that 46% of respondents affirmed that being involved in The CochraneCollaboration had helped them to deal with health

care on a day-to-day basis (predominantly those who joined for personal reasons); 43% replied in the negative to this question.CCNet members use Cochrane information in a number of ways, for: educational purposes as part of evidence-based practice courses (3 people); promoting the use of evidence in health care and patient involvement (25 people), one used the information for both these purposes; preparing information for patients (3 people), a further three combined preparation of materials with promotion of the use of evidence. Other uses described were for changes in policy (1); policy, advocacy and education (1), and as a basis for work opportunities(1).

What the response to the survey indicates is a firm commitment by CCNet members to helping people accept responsibility for taking part in healthcare decision-making and in improving their knowledge base so that they can be effective in this process. Reassuring for us is that the respondents are also committed to a role in the development of Cochrane systematic reviews.

Results of this survey have been written up for the next issue of Cochrane News.

Inventory of examples of the practical influence of Cochrane reviews

Thank you all for your assistance in developing our first inventory, containing examples of resources which communicate and disseminate Cochrane evidence. This inventory is now complete, and will be posted on The Cochrane Collaboration web site soon.

We are now moving on to the next important phase of this project: to show how Cochrane evidence is influencing real-world health decisions. The Canadian Cochrane Network and Centre (on behalf of the Cochrane Collaboration Steering Group) is collecting examples of Cochrane reviews or other Cochrane work having a demonstrated impact on healthcare practice, policy or research. We hope these examples will provide a valuable resource, demonstrating the positive impact of the Collaboration in a range of settings around the world.

If you know of an example like this, we need you to share your stories with us. To help you collect your examples, we have prepared some instructions and sample stories. This document is available at In general, we would like you to write up your examples like a short abstract, to make sure that we have all the relevant information. We would prefer detailed information on individual examples (rather than de-identified data), so that we can follow up any questions and provide as much information for others attempting similar projects as possible.

Miranda Cumpston, Canadian Cochrane Centre

Email:

What’s Happening

The 6th Rocky Mountain Evidence-Based Health Care WorkshopAugust 7-12, 2004,Keystone, Colorado

For the first time, a group of healthcare consumer advocates is being invited to participate in the Rocky Mountain Evidence-Based Health Care (EBHC) Workshop. Together with journalists, policy makers and clinicians, advocates at the workshop will have an opportunity to discover and explore methods to find, assess and relate evidence. A limited number of scholarships (tuition, travel and accommodations within established parameters) were made available to consumer advocates committed to incorporating EBHC methods into their advocacy work.
Additional information is available at For questions about workshop content, please contact Jane Nadel at .

Ottawa, 2 to 6 October 2004

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

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To “bridge the gap” with clinical practice, between high and low-income countries and individuals, methodologists and reviewers, and gaps between producers and users of healthcare information.

Consumer Stipends

A total of 26 people applied for a consumer stipend. Six stipends have been awarded and eight people remain on a waiting list. One sponsored registration, provided by The Cochrane Collaboration, was awarded to a local Canadian consumer on the waiting list.

Consumer activities to take place at this next annual colloquium

Meetings

An openCCNet strategic planningmeeting is booked for Tuesday 5 October at 12.30 to 1.30 (lunchtime) - Liz Whamond and Steff Lewis (co-convenor of the Monitoring and Registration Group)are to chair this meeting and the aim is to allow all members of The Collaboration to come andgive their input on what they want of/from CCNet (a discussion paper to be prepared).

The AGM for CCNet is on Tuesday 5 October at 3.30 through to 5pm. In the firsthalf hourof this meeting, Claire Glenton will talk about a table or balance sheet that the Back Group areworking with to improve the accessibility of Cochrane reviews.

There is a Cochrane Fields meeting Saturday 2 October at 11 am to 12.30 which CCNet members are invited to take part in.

Workshops

A preliminary introductory workshop at the University of Ottawa (Nancy Santesso)

Making sense of scientific evidence: a workshop for consumers andindividuals collaborating with consumers

Consumers in Research: Understanding the results of Cochrane reviewsfrom a consumer perspective

How to make Cochrane consumer synopses more informative and to ensureconsistent quality

Consumers in Research: Enhancingconfidence in commenting on reviewsfor consumers

Development of consumer synopses/summaries: a workshop for consumersand people collaborating with consumers

When untested therapies become accepted practice: Evidence-based medicine and consumers.

If you are planning to attend the Colloquium, you can sign up for scheduledmeetings at and for workshops at

You will need to login tosign up for meetings and workshops. Thanks to Daren Spithoff and the Canadian Coordinating Committee,once you have signed up for the meetings and workshops that you areinterested in, you will be able to view your personalized Colloquiumschedule any time you login to the Colloquium web site by going to the ‘MyAccount’ page and then visiting the ‘My Colloquium Schedule’ page.

CCNet web site

The Consumer Network web pages at still coming! They have been developed and submitted to the ‘Cochrane Web Team’.

Funding from the Australian Department of Health and Ageing grant was used to complete this project.

A ‘Resource Notebook for consumers in research –systematic reviews from a consumer perspective’ was also developed as part of this project. It answers questions as to ‘why consumer involvement’ and provides explanations of terms and references. This document is to be on the web site. Although it has been through a detailed peer-review process, we would appreciate further input, especially in widening the terms and references – get a copy from e-mail: .

About CCInfo

CCInfo is a bi-weekly electronic newsletter 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. To subscribe, please send an email (from the address you normally use) to

The content of your message is simply: subscribe.

About the Cochrane Haematological Group

This Group (CHMG) runs EBM courses for oncology patients to support its work.

The activities of the CHMG focus specifically on the following haematological disorders:

acute lymphoblastic leukaemia (ALL)
 acute myeloid leukaemia (AML)
chronic myeloid Leukaemia (CML)
chronic Lymphocytic Leukaemia CLL)
Hodgkin's lymphoma (HL)
non-Hodgkin lymphoma (NHL)
myelodysplastic syndromes (MDS)
 aplastic anaemia (AA)
 bone marrow and stem cell transplantation (BMSCT).

Since 2003, the role of a professional consumer co-ordinator (funded by the German Cancer Aid) in this group has enhanced co-operation between patients and the CHMG. Cochrane workshops are offered for cancer patients to improve the work of our consumer network and also the role of German consumers in The Cochrane Collaboration.

In Germany, consumer involvement in health care issues is being increasingly promoted. Yet consumers need skills to ensure that their interests are considered. Our program of continuing education about health research methods and offering of support should be one way to contribute to increased skills.

The first introductory courses (Nov 2003, Mar 2004) for patients on evidence-basedmedicine (EBM) were adapted from other EBM-curricula available for health professionals and lay persons in Germany since 2001. The topics coveredare detailed below.

The workshops were evaluated so as to get feedback to help us to improve the workshops and the way the ‘consumer network’ collaborates with patients. The feedback identified that patients are interested in learning about all aspects of EBM (including search strategies) and in EBM courses for health-professionals. This was recognized in the first advanced course held at the end of April 2004.

Our experience from these 3 workshops is that patients can learn about EBM in a similar way to health professionals; patients can learn about critical appraisal and other EBM methods. But, as there is often discussion about medical content (which is different for health professionals and consumers), there is a need for patients to have their own courses.

During a workshop at the Cochrane Continental European Entities Meeting, May 14th 2004 in Amsterdam, the possibility of sharing these consumer education and support programs with other Cochrane Review Groups was eagerly discussed.More Information is available on our website:

E-mail:
E-mail:

Annual Collaboration and Contributors’ Meetings have been held in Edinburgh Scotland (UK); ProvidenceUSA; Amsterdam the Netherlands (Continental European); and Sydney Australia (Australasian).Consumer workshops and/or presentations were run at these meetings and provided an opportunity for local consumers, new and old, to meet. We appreciate this opportunity that the Cochrane Centres give us! More follows:

The US Cochrane Collaboration Meetingwas held in April in Providence, Rhode Island. The theme of the meeting was ‘Building the Foundation: Creating Greater Awareness and Use of Evidence-based Health Care’, which provided the opportunity to run a workshop for consumer advocates and an introduction to the Cochrane Consumer Network.A media panel run by Maryann Napoli“was terrific”– four investigative reporters including Ray Moynihan were involved.

One of the most striking themes to emerge at the US Cochrane Center Collaboration Meeting was that, despite increasing availability of evidence-based healthcare information, clinicians and consumers aren’textensively usingthat information,albeit for different reasons. Since many consumers rely (often too heavily) upon their physician’s advice, it is disconcerting to learn about theobstaclesfaced by physicians who attempt to convince their colleagues in professional societies that the best available evidence should be the basis for clinical practice guidelines. Virginia Moyer, Professor, Center for Evidence-based Medicine, University of Texas Medical School underscored the magnitude of this problem.

One source of the gap between evidence-based information and utilization was identified in a lively session chaired by Maryann Napoliof CCNet and the Center for Medical Consumers, during which journalists explored why healthcare evidence istoooften ‘lost in translation’. Panelists includingTrudy Lieberman, Director for Center of Consumer Health Choices at Consumers' Union recounted the pervasive way mainstream media hypes and sensationalizes screening and treatment based on commercial interests instead of medical evidence.