Our Lives Begin to End the Day We Become Silent About Things That Matter. Martin Luther

"Our lives begin to end the day we become silent about things that matter."Martin Luther King Jr

1

Contact e-mail:

E-mail discussion list:

Web address:

Contents Page

What we are about1

Meeting reports, updates2

News from Cochrane Groups5

XIII CochraneColloquium, Stipends6

Evidence Aid: after tsunami7

Governance8

Top fifteen Cochrane reviews9

What we are about

Jessie Gruman,President of the Center for the Advancement of Health (US)* calls for health “intelligence”. This is “the information we need that helps us to weigh up all the relevant information and to personalise it in order to make a specific decision in a timely fashion”.

**Social reform in the 1960’s was based on the introduction of key factors into large institutions: funding, modern technology, training of personnel, and better management. The ‘institutional’ assumption was that personal and community well-being are produced by such institutional systems. People are clients – the recipients of institutionalised servicessuch as hospitals, doctors and medical systems.

What many people now recognize is that the critical determinants of health are NOT the medical systems, or access to them. The key determinants include: individual behavior; social relationships; the physical environment; economic status (environment).

The key to change has citizens (local participant in a democracy) and their actions at the centre (compare with patient-centred care), surrounded by their social relationships and supported by local institutions

Historically associations are small groups of unpaid citizens working for change in individual behaviour, social relations, the physical environment, and economic status. They provide a unique context forcooperative, creative action and entrepreneurship toward a common purpose or cause.Every person has unique skills, capacities, and gifts.A good society provides an opportunity for those gifts to be given, shared, and made even more powerful.PEOPLE JOIN BECAUSE THEY CARE and work to:

-develop potential cf ‘fix’ people;

-develop contracts;

-focus on communities cf individuals;

-focus on assets cf deficiencies;

-identify opportunity cf respond to problems.

People are the answer rather than projects!

*The Center for the Advancement of Health (US) develops evidence-based news articles about health issues for the media

( Good Behavior Feb 2005)

**John L McKnight, Northwestern University. May 29, 2003: The Institute for Policy Research (IPR) Distinguished Public Policy Lecture Series – Regenerating Community: The Recovery of a Space for Citizens.

Our Cause

1. “The clinical encounter is an interpretive and creative act that goes beyond objective scientific enquiry.” (Trisha Greenhalgh British Journal of General Practice 1998;48:1448-9)

2. The bottom line is to get the evidence-based healthcare information out there– to both service providers and consumers.

3. Five basic steps of implementation of evidence-based health care (Haynes and Haines BMJ 1998 317:273-6)

-generate evidence (from research)

-synthesis of evidence

-develop evidence-based clinical policies

-apply policies at organizational level

-apply evidence at individual level ie incorporating patient values, beliefs, family circumstances, co-morbidities etc)

The Cochrane Musculoskeletal Group areworking todevelop evidence-based actionable messages from Cochrane reviews (Peter Tugwell, the review Group Co-ordinator uses, the term ‘ebams’). They are preparing summaries to facilitate access and implementation of evidence-based information and to promote effective communication between consumer and service provider. Sound familiar?

As serendipity would have it, CCNet has submitted an application for fundingto the Australian Department of Health and Ageing( for Cochrane entities based in Australia) – “to improve the use of reference to evidence-based medicine in decision-making processes between consumers and healthcare providers”.

US CochraneCenter Consumer Coalition, March 30 to April 1, 2005

Conference Day - Creating Alliances: Consumers and Evidence-based Health Care

The objective was to create working alliances with US-based consumer advocacy groups and global leaders in evidence-based health care, promoting the missions of both the US Consumer Coalition and The Cochrane Collaboration.

Specific aims:

-to understand the overall function of the Collaboration;

-obtain skills to use The Cochrane Library to maximize its effective use

-learn EBHC concepts and skills

-inform the Collaboration about Coalition member groups and highlight areas where the Collaboration can play a supportive role;

-discuss areas where CLIB can be improved to better support the needs of consumers;

-discuss current and future EBHC initiatives within the US including areas where work of the Collaboration can be used.

The Conference Day was preceded by a formal dinner attended by consumer advocate members of the Coalition, the US Center Advisory Group, Cochrane Center Directors, some Cochrane Steering Group representatives including myself, and Liz Whamond (Canada) as chair of the CCNet governing body.

Conference Day started with a session on getting to know more about The Cochrane Collaboration (Jim Neilson), CCNet (Liz and Janet) and the foundations for evidence-based health care (Sally Green and Rob Scholten). Coalition members then attended a hands-on session accessing The Cochrane Library with Deborah Pentesco Gilbert of Wiley & Sons and Jordi Pardo. They do not have access to the Library and were very quick to look for reviews in their particular areas of interest – as well as do the task in hand. An interesting question raised during this session was how they could follow up the information in an Abstract with the review author or review group.

After lunch a number of US Coalition members who are strong consumer advocates representing large consumer organisations, briefly outlined their constituencies and what they see as the role for evidence-based health care in their work. They were followed with a session on getting evidence-based information out to the public. Coalition and CCNet member Maryann Napoli stressed the importance of clearly written abstracts because this is the only part of the review that is freelyaccessible on the internet. She used the example of the Cochrane review, showing flu vaccines to be minimally effective for healthy adults. This abstract, however, is written in a medical journal style not understandable to journalists or the public.

Abstracts are freely available on with the synopsis underneath, and so may be all that a person can access. She was followed by a reporter who prepares health media stories and a member of an organization that prepares and disseminates consumer reports. Followed by possible alliances for consumers a lively discussion evolved with a number of people from The Cochrane Collaboration contributing. It was lively and wide ranging.

Liz and I were also invited to attend the Annual General Meeting of the US Consumer Coalition. We were pleased to be able to contribute to the proceedings and to accept the opportunity to work with individual consumers on pilot projects involving preparation of consumer summaries and critiquing an online training program that is under development.

All Cochrane people present recognized the positive energies and wealth of knowledge of the US Consumer Coalition members. Challenges to working together include the high degree of ‘specialisation’ of many of the advocates to a particular health field or population and, therefore, the need for identifying a common achievable purpose around incorporating evidence into every day health care.

Jean Jones (1923 - 2005): her memory and influence continues by Kathie Clark

I visited with Jean and her husband, Frank, about a month before she passed away. As always she was eager to hear the latest news from The Cochrane Collaboration. As well we talked about the current state of consumer advocacy in Canada and her disappointment that it wasn't as vibrant as she believed it ought to be.

As I left she loaned me a book that she found very informative and urged me to read it. The book called 'The Truth About the Drug Companies' was written by Marcia Angell, MD, former editor in chief of the New England Journal of Medicine and now a member of HarvardMedicalSchool's Department of Social Medicine. The book was published last year (2004) by Random House.

The book is about the American pharmaceutical industry but the issues exposed by Dr. Angell are not unique to the US. The marketing practices that masquerade as education and research are important for consumers involved in The Cochrane Collaboration to know about. Consumers need to be aware of ways that drug companies promote diseases to match their drugs and thereby increase their sales and profits. Contrary to popular belief, the drug industry spends far less on research and development than they do on marketing and publicity. Very few of the new drugs are indeed new drugs, most of them are variations on existing drugs with very little added value and often huge cost increases.

As Jean shared this book with me, I want to pass it along to the consumers involved in the Collaboration. In this small way the memory and influence of Jean Jones continues.

Kathie Clark, March 25, 2005

Jean Jones (Canada) was one of the early pioneers of consumer participation in The Cochrane Collaboration. She dedicated much energy, vision and commitment to consumerism in The Cochrane Collaboration, her own Hamilton community and across Canada. Cochrane Groups she was involved with included the Consumers and Communication Group, the Airways Group, and the Health Care of Older People Field. Jean was a member of the Collaboration Steering Group from February 1996 to October 1997 when Chris Silagy of Australia was Chair and held the position of Convenor of the Registration and Monitoring Group during Andy Oxman's time as Chair of the Steering Group.

Recently Jean ended her term as consumer representative on the Executive Committee of the Canadian Cochrane Network/Centre. Her last formal commitment was as chair of the Consumer Stipend Committee for the Ottawa Cochrane Colloquium in Ottawa, 2004, although she was unable to attend the colloquium itself.

CCNet web site

Have you visited our web pages on If so, we would like your feedback on what we can do to improve it.The main Cochrane web site ( has a full list of Cochrane review titles, abstracts, and items of news as well as current contact details for Cochrane entities.

The Cochrane Library

Visit The Cochrane Library on Wiley InterScience at Review abstracts with consumer synopses underneath are available free of charge.

The latest issue (Issue 2, 2005) of The Cochrane Library was released on 20th April 2005. The release dates for the remaining issues for this year are: 20th July 2005, Issue 3; 19 October 2005, Issue 4.

Consumer summaries - work in progress

Yes, we are moving away from synopses to plain and simple summaries!

CCNet submitted a discussion paper on consumer summaries for the recent Collaboration Steering Group meeting. Many consumers were involved in discussion around this topic and in the preparation of the paper, which made the Steering Group representatives’ work a lot easier.As did the fact that the publishers of The Cochrane Library (Wiley & Sons) had also delivered a presentation on ‘the future’ on the previous day and mentioned a number of similar ideas.

We are keen that plain language summaries of Cochrane reviews be available as stand-alone documents, for example on the Collaboration web site and that subsets and translations (into other languages) are more widely used.

CCNet is in the process of developing an effective program that involves its members in providing aservice to Cochrane review groupsto draft summaries on request – if you already do this or want to be involved please contact the project manager (). It is important that all reviews have effective summaries and we are working to support this goal but need your help.A work plan and budget is being put together so that expenses can be covered.

Format of summaries

The new Handbook Advisory Group Guidelines to review authors for writing summaries in plain language (to accompany the review on The Cochrane Library) have a word limit of 200 to 400 words.

The summaries have two fields:

a)a restatement of the title in plain simple language (maximum 256 characters). They do not need to be declarative and include participants, intervention and outcome when these are in the title;

b)(i) why the review is important: background to healthcare problem, description of intervention(s) and rationale for use;

(ii) main findings – can use numbers for results, include number of trials and participants;

c)adverse events (and if they are looked for)

d)any limitations of the review (eg very specific population, poor methods of included studies).

CCNet Steering Group representatives report, Providence, 2-4 April 2005

The two CCNet representatives are Godwin Aja (Nigeria) and Janet Wale (Australia). Both attended the recent 2.5 day meeting in Providence, US. The meeting had a very full agenda aimed at furthering the work of The Cochrane Collaboration.

Some of the most relevant issues for consumers included: highlighting priority areas in the Strategic Plan and identifying responsibilities (eg consumer participation, developing country involvement); discussions with the Library publishers Wiley & Sons on the present use of the Library and ideas for the future; guidelines for review synopses, now plain language summaries; processes for consumer summaries, their use and where they can be found; a demonstration of the New Information Management System and Contact database – named ‘archie’.

This was the second meeting for Godwin and Janet working together on the Steering Group.It provided an opportunity to have a better understanding of our role together. We were well served by the carefully prepared discussion paper on ‘Consumer summaries of Cochrane reviews’ and are learning to be more effective Cochrane consumer representatives. We ask you, as our constituency, to help us by communicating your views on consumer participation in the Collaboration and other relevant issues, and providing feedback on issues raised. The developments in the Developing Countries Initiative provide encouragement for CCNet to become more relevant to consumers in developing counties, and disadvantaged communities/people.

We are hoping toset up a section‘Information for Developing Countries Consumers’ on and arepleased to have HEPS Uganda join in with this initiative.

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!

CCNet Courier

We have been piloting a ‘newsletter’ that is contained within the e-mail message field. The idea is that this is based on a healthcare issue. To date, painkillers for arthritis and behavioural interventions for pre-diabetes have been referred to.

If there is an area that you would like to be involved in developing please contact us!

Consumers in developing countries

At the Ottawa Colloquium Nellie Orifa of Kenya was kindly given a ‘preloved’ laptop computer ready to use for her Cochrane work through the efforts of Dell Horey and other consumers of the Cochrane Pregnancy and Childbirth Group.

If anyone else comes across a still usable but no longer needed laptop please keep in mind that there are other consumers who could put it to good use.

Watch this space for further developments.

What’s happening!

The latest issue of Cochrane News is available on the Collaboration web
site at

A change for the better

A number of review groups call for consumers to give input on a protocol or review using our e-mail discussion list.

Early in the year the Menstrual Disorders and Subfertility Review Group Co-ordinator introduced a great improvement in this process. It was providing background information on the health question, important as some reviews have very technical titles! Other Cochrane Review Groups have followed this excellent example.

Remember, if you want to comment on a protocol or review but are unsure where to start – volunteer and then email for assistance().

A call for HELP!

Does anyone have any experience and/or ability in developing kits and posters?

These are to be used to alert the general public to how important healthcare research is and how they can access consumer information from The Cochrane Collaboration.

If so, please e-mail

Consumer roles

The Cochrane Child Health Field

Joy Simha of the US Consumer Coalition has recently agreed to serve on the Advisory Board of the Cochrane Child Health Field, based in Canada. She is the mother of young children and will be ‘just the person’ to help the field in its efforts to connect with parents.

News fromCochrane groups

The Cochrane Bone, Joint and Muscle Trauma Group

The Musculoskeletal Injuries Group has had a change of name, see above, which was brought about as a result of new funding arrangements. (Lesley Gillespie, e-mail:)

The Cochrane Consumers and Communication Review Group

Megan Prictor is taking a break (to go on secondment to a senior admininstration position). Jane Schleiger will be acting Review Group Coordinator four days per week until the end of September. Jane's email address is:

The Cochrane Inflammatory Bowel Disease and Functional Bowel Disorders Review Group

The Cochrane Inflammatory Bowel Disease (IBD) review group has changed its name in line with its broader scope than interventions for the induction and maintenance of remission in Crohn'sdisease and ulcerative colitis.
John K MacDonald (Coordinator) e-mail: or
secondary e-mail:
web:

Cochrane Menstrual Disorders and Subfertility Group