It S Surprising How Much You Can Accomplish If You Do Not Care Who Gets the Credit s1

It’s surprising how much you can accomplish if you do not care who gets the credit.

Abraham Lincoln

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Contact e-mail:

E-mail discussion list:

Web address: http://www.cochrane.org/consumers

Contents Page

Greetings 1

Cochrane and CCNet involvement 2

Consumer summaries 3

XIV Cochrane Colloquium, meetings 4

What’s happening 5

WHO International Trials Registry Platform 6

Greetings from Canada and welcome to the 12th edition of the CCNet Newsletter!

First I would like to give you a little bit of exciting news from the Canadian Cochrane Centre. Through the leadership of Dr. Jeremy Grimshaw and his dedicated staff, the Canadian Cochrane Network and Centre (CCN/C) secured $7.8 million in funding over the next five years from the Canadian Institutes of Health Research and the Canadian Agency for Drugs and Technologies in Health. These funds are dedicated to the infrastructure for all Cochrane entities in Canada (including the Centre, five Review Groups, two Fields and one Methods Group), and to knowledge synthesis and translation by the Cochrane Collaboration. Key personnel are now being hired and one of those positions, a knowledge broker, will be tasked with developing relationships with health professionals across Canada and with organizing a new network of Canadian consumers. A modest amount of money has been dedicated towards consumer stipends.

CCN/C has generously agreed to support three Canadian consumers who have been active within the Collaboration to attend the Cochrane Colloquium in Dublin, Ireland in October. The money is being donated to the main Colloquium Stipend Fund and the successful Canadian applicants will be chosen from among those who have applied for support through the stipend process. This is good news for Canadian consumers!

Secondly, I would like to affirm why consumers are so important to the collaboration. Many of us come through personal experience in dealing with a chronic disease or other illness. Some become involved because of an illness of a loved one. And some simply wish to contribute out of concern for the welfare of others. We believe that consumer involvement brings a unique perspective to reviews. Consumers ensure that questions are relevant to people requiring health care and they help identify outcomes from healthcare interventions that are important for other consumers. Not to be forgotten are those consumers who hand-search journal articles, disseminate information to other consumers and help with translations.

As the body of medical research grows, so grows the need for clear, plain language summaries of research findings. CCNet is working hard to ensure that plain language summaries are written for all systematic reviews.

I want to take this opportunity to thank Janet Wale, on behalf of all of us, for doing such an excellent job in putting this publication together. The task is huge; the content is informative and the CCNet Newsletter is our main means of communicating with consumers from around the world.

We invite you to join CCNet and become involved. We need our ‘Net’ to grow.

Liz Whamond

Chair, Cochrane Consumer Network (CCNet)

WHO ‘Patient for Patient Safety Program’

The ‘Patient for Patient Safety Program’ is one of six action areas in the WHO World Alliance for Patient Safety (www.who.int/patientsafety). The program puts patients and health consumers at the very center of the quest to improve patient safety. Consumers from all corners of the globe are infused in the work of the six strands of the World Alliance to ensure the perspective and viewpoint of patients, families and health carers.

Silvana Simi (Italy) and Mingming Zhang (China) attended the first workshop and Patient Safety Summit to share ideas in London last November at the invitation of WHO. As consumers in The Cochrane Collaboration, we had the same goal to involve consumers and patients in decision making to improve health care. There were 23 patient champions from 19 countries attending this workshop. The Patients for Patient Safety London Declaration was discussed and published. Consumers can offer the richest resource of information related to medical errors.

Patients want to know the truth when things go wrong and to be treated with honesty and openness rather than face a closed door of denial.

I attended the workshop as an elected representative of China. This program on patient safety is so meaningful for my country that I want to make a strong contribution to this movement. Since returning, I have given several talks, published articles introducing this program and working to raise the awareness of the public, and had discussions with some clinical departments of the West China University Hospital, Chengdu. Funding grants to improve patient safety have been submitted. Certainly, there are many difficulties and challenges to meet in my country. For example, most clinicians do not like me talking about these issues among patients. It is still a long way to go but now the Chinese health department pays more attention to patient safety and some actions have been taken.

Mingming Zhang, Chinese Cochrane Centre

Silvana Simi, Italy

The Fourth Asian-Pacific Conference on Evidence-based Medicine (EBM), Chengdu China, 15-17 April 2006

Godwin Aja and Janet Wale were invited as two of a number of Cochrane speakers to this conference. The talks were based around a consumer perspective of evidence-based health care in developing countries and the assessment of evidence. Attendees were from all over mainland China, Taiwan and Hongkong. Consumers and patients do not have a say in their health care in this country and we were part of a session on education of medical students. Other speakers in the session gave an excellent view of how Chinese doctors are taking part in overseas projects and bringing what they learn to involve Chinese Medical universities. A lot of progress is being made in China in teaching evidence-based medicine. A hot topic of this meeting was how to evaluate trials in Traditional Chinese medicine and to improve trial quality.

As a result of this journey, Godwin has informally received an award for the fastest learner to use chopsticks (or go hungry). The two CCNet members were responsible for their own travel expenses for this meeting. The Chinese Cochrane Center generously funded accommodation and living expenses - thank you – and to Mingming Zhang (China) for all her assistance.

Other talks

The Thai Cochrane Branch also held a one-day meeting on evidence-based medicine in April, taking the opportunity to include visiting Cochrane people from around the world. Janet spoke about the role of CCNet in developing summaries of Cochrane reviews.

Cochrane Library news

Access to The Cochrane Library for contributing Cochrane consumers

- who do not have national access in their countries. In October, 2005, a proposal by Carol Sakala and Liz Whamond to give active consumers within the Collaboration the opportunity to access The Cochrane Library was approved by the Cochrane Steering Group.

The names of the first eligible consumers have been sent to Wiley & Sons. This is to be an ongoing service to members of CCNet who actively contribute to the work of the Collaboration.

The Cochrane Library

For those of you who are able to access The Cochrane Library, you will be pleased to know that a new home page and search default was launched soon after publication of the second issue for 2006, on April 19th. Wiley would like to receive your comments, particularly on the guidance section for ‘patients’ (these can be emailed to ).

New reviews published include…..

The Cochrane Library is on Wiley InterScience at www.thecochranelibrary.com.

The Cochrane web site

The web site www.cochrane,org has a new look and the search has been modified. The objective is to make the links to The Cochrane Library more evident. Surveys show that the web site is a regular route to The Cochrane Library; the summaries and abstracts of reviews are also well utilized. The web site has important roles both for people active in the Collaboration and for ‘external’ people. It provides a sense of who and what the Collaboration is. This makes it a complex web site.

Surveys have been carried out on both the use of the Library and the Cochrane website, which is a clear pathway to The Cochrane Library. Summaries and abstracts of reviews are also popular pages on the Cochrane web site.

As part of the web site project to develop templates for use by Cochrane entities the UK Cochrane Centre now has its web site: www.cochrane.co.uk

Buying a single review

When users without access to the Library try to access the full text of a review they get the prompt "Wiley InterScience is unable to give you access to this content" (see attached screenshot). This screen also contains the option to buy the review for USD 25 via the pay-per-view option. To use pay-per-view, a new user will first need to register with Wiley InterScience.

Cochrane Collaboration News

Midyear Centre Directors and Steering Group meetings

Meetings were held in Khon Kaen, Thailand in April. The two CCNet representatives on the Steering Group, Godwin Aja (Nigeria) and Janet Wale (Australia) attended.

The heads of Cochrane review groups (Co-ordinating Editors) took this opportunity to meet and to run a brainstorming session on prioritization of reviews and the relevance of this process to the Collaboration.

Following from the Steering Group meeting, CCNet members are to contribute to an ethics statement for The Cochrane Library. It is very evident that CCNet needs to be internally motivated and to give input into the Steering Group and The Cochrane Collaboration as a vibrant entity.

Janet Wale’s term of office (three years) finishes in October 2006. This means that we will be having an election for the CCNet second representative in the mid-year. Janet is officially able to stand for another term. Steering Group representatives (existing and immediately past) are expected to be directly involved in the governance of CCNet. The overall workload is, therefore, in the order of half a day per week, or more.

A review of the role of the Cochrane Steering Group

Alessandro Liberati, Director of the Italian Cochrane Centre, is chairing the panel undertaking this review. Godwin Aja and Janet Wale as the two present CCNet representatives completed a questionnaire. Present and past members of the Steering Group and each Cochrane group (entity) were asked to do this. Liz Whamond and Gill Gyte completed the questionnaire for CCNet. The final report is due by the end of September 2006.

A strategic review of The Cochrane Collaboration is also planned in the near future.

The Monitoring and Registration Group (MRG)

Heather Maxwell (Scotland) and Rob Scholten (Netherlands) are the Co-Convenors of the MRG. This is a subgroup of the Steering Group that works to ensure the viability of Cochrane groups.

Mingming Zhang (China) is the CCNet representative. CCNet is still working on its registration as a Cochrane Field with this group.

Consumer representative on Cochrane Feedback Advisory Group

People who access reviews on The Cochrane Library can provide feedback online. The advisory group deals with issues around the process of obtaining and dealing with such feedback. Maryann Napoli has represented CCNet on this committee since 2002. Kathie Clark, who is already a member of the group, has agreed to represent CCNet. We thank Maryann for her efforts on this Advisory Group. Consumers are able to give their comments on reviews through this mechanism, which may then be published with the review and can be addressed by review authors.

Umbrella reviews for healthcare providers

The first umbrella review has been completed on bedwetting (enuresis) in children and will appear in a new journal being prepared by the Cochrane Child Health Field, based in Canada. The journal is published by Wiley & Sons, the publishers of The Cochrane Library.

Joy Simha (US consumer advocate) is on the Advisory Group for the Child Health Field.

Umbrella reviews of Cochrane reviews combine the findings of a number of related reviews so that the information is in one document. The working party on umbrella reviews is also working to incorporate summaries of findings tables. This new way of summarizing the findings of results will be available in 2007 when updated Cochrane software (RevMan 5) that is used to prepare Cochrane reviews will become available.

Summaries of reviews for the public

Plain language summaries - work in progress

CCNet continues to prepare summaries for existing reviews on the Library that presently do not have a summary. Drafts are prepared and forwarded to the Cochrane Review Groups. This year a small team has been concentrating on summaries for the Neonatal Group. We received funding from the Steering Group for this work.

We have also prepared draft summaries for new reviews at the request of a Review Group.

The Cochrane Complementary Medicine Field and CCNet working together

CCNet members are working hard to complete the first 12 overviews of summaries of Cochrane reviews in a specific healthcare area. This work has funding from the US….

We have developed a management structure for this project involving a manager, an administrator, writers and an advisory group. We are sending out draft overviews to consumers for comment so that we can collate feedback before sending the overviews to review groups. The exception was our pilot overview on menstrual pain that went to the author of the included reviews very early in the process. Thank you to everyone who is contributing to this project.

The e-mail discussion list

The e-mail list serve, is a moderated e-mail discussion list that helps with communication - we would like to hear from you too!

Please let us know of any changes to contact details:

What’s happening!

The April 2006 issue of Cochrane News is now available for download
from www.cochrane.org/newsletters