MARCH 2003, ISSUE 1
MESSAGE FROM THE CHAIR
Welcome to Issue I of the Cochrane
Consumers Newsletter! It contains
information on the purpose and
management of the Network, about our
developing website, projects currently
being undertaken and more.
Over the years I’ve been asked (often by
researchers
and
sometimes
by
physicians) why consumers would be
interested in being involved with
evidence-based
medicine.
Surely
someone needs to interpret that
information for us! But I think this
attitude is changing – at least I hope so.
Let me step back in time to my mother’s
generation. Ruby was a well-educated
and thoroughly modern woman for her
time (born in 1916). But as I was
growing up I remember that my mother
always deferred to her physician. She
did exactly what the doctor said and
never questioned anything that she was
told. Indeed, her physician was God!
And that worked quite nicely for her
until she died in 1999.
Then my generation came along. My
mother said that I was born asking
questions and I don’t think I’m any
different in that regard than most of my
contemporaries. When it comes to health
issues, there is so much information
available in the media and on the web
that it’s incumbent upon me to make
sure that I have access to and understand
the latest available research. Take for
instance the hot debate over the years on
Hormone Replacement Therapy. On
tonight’s news I hear that it is of little or
no value to women and may even carry
increased health risks.
Systematic reviews are a way of
harnessing bodies of published research
data. For those consumers who are
interested in becoming involved, we
welcome you. Some of us are interested
in giving back to a particular health issue
that has affected our life or the life of
someone precious; others are simply
interested in contributing. Whatever
your
reasons
for
considering
involvement, it’s certainly challenging,
interesting and fulfilling.
And please join our Network. We’d love
to have you.
Sincerely,
Liz Whamond
Chair, Governing Council
Cochrane Consumer Network
ABOUT US
Generally researchers and healthcare
providers prepare Cochrane reviews, but
they are not the only ones who
contribute, for example, medical
librarians
and
consumers,
also
participate in the task. Cochrane
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Collaborative Review Groups invite
consumers to comment on reviews in
preparation at the protocol stage, when
the review question and how the review
is to be undertaken are discussed, and
again at completion of the review
process before the review is placed on
the Cochrane Library. People also have
the opportunity to comment on protocols
and reviews through the ’Comments and
Criticisms’ section of the Library.
We welcome new people who can
contribute a consumer or patient
perspective to the development of
Cochrane systematic reviews of best
evidence for healthcare interventions.
The Cochrane Injuries Group and the
Wounds Group are two review groups
who are currently looking for consumers
to work with them.
The Cochrane Consumer Network
works toward:
1. Enabling and supporting consumers in
contributing to the function of all
Cochrane entities: Reviews Groups,
Fields, Cochrane Centres and the
Cochrane Collaboration as a whole.
Consumer participation aids in the
development of high quality systematic
reviews that inform evidence-based
practice in healthcare, improving the
quality of Cochrane reviews, and helping
to implement evidence held within the
Cochrane Library;
2. Increasing awareness within the
Cochrane Collaboration of the benefits
of working in partnership with
consumers, and raising awareness of
issues important to consumers;
3. Raising awareness about the place for
evidence based practice and the work of
the
Cochrane
Collaboration
in
communities and consumers outside of
the Collaboration.
Management of the Cochrane
Consumer Network
The Network has members in over fifty
countries. It is managed by an
international governing council who are
elected to their positions. The first
Governing Council took up its position
at the beginning of January 2003.
Under its current constitution, the
Consumer Network requires the council
to consist of:
i)
ii)
iii)
iv)
v)
vi)
One member from Africa
One member from Asia/Pacific
(defined as the Middle East,
Asia, and Pacific countries,
excluding Australia)
Two members from Australia
One member from Europe
One member from Latin America
One member from North
America (other than Latin America).
The Governing Council of the Cochrane
Consumer Network is responsible for
coordinating the internal organisation
and support of consumers within
Cochrane entities - working toward the
Mission of the Cochrane Collaboration
to help people make well-informed
decisions about healthcare by preparing
systematic reviews of ‘best evidence’.
A NEW ACRONYM
We are planning to propose to the
Method and Registration Group that the
Cochrane Consumer Network adopt the
name CCNet. This has become
necessary as the Cochrane Cancer
Network is now referred to as CCN.
Comments welcome!
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The Council is made up of consumers
who themselves carry out entity tasks.
The present members are Godwin Aja
(Nigeria), Don Baumber (Australia), Gill
Gyte (UK), Janet Wale (Australia), Liz
Whamond (Canada) and Sara Yaron
(Israel).
The Steering Group representatives
Silvana Simi (Italy) and Samuel Ochieng
(Kenya) are co-opted onto the present
Governing Council.
FORTHCOMING ELECTIONS
The Consumer Network has two
positions on the Cochrane Collaboration
Steering Committee. Samuel Ochieng’s
term of office terminates in Barcelona,
so an election for a consumer network
representative will need to be held in the
middle of the year. If you wish to
nominate for the position and/or have
your say, that is get to vote, for the
Consumer
Network
representative,
please make sure you send in an update
of your contact details using the form at
the end of this newsletter. These details
are kept in accordance with strict
Privacy Regulations.
CONSUMER POSITIONS ON
COCHRANE COMMITTEES

Amy Zelmer (Australia) is the
consumer representative on the
Advisory Committee for Cochrane
News. The editorial base is at the
Canadian Cochrane Network and
Centre (CCN/C).

Claire Glenton (Norway) is on the
Advisory Committee responsible for
ensuring
good
judgement
in
decisions regarding content and
content
sources
for
the
Collaboration's main web site.
THE COCHRANE CONSUMER
NETWORK WEB SITE
Claire Glenton of the Nordic Cochrane
Centre, Norwegian Branch, is working
hard to develop a web site for consumer
participation within the Cochrane
Collaboration. This can be viewed at
www.cochrane.no/consumers. It will
form the basis for the consumer section
of the main Cochrane web site and any
feedback is welcome – through the
CCNet contact people (contact details
below). It is open for comment and is a
trial version.
A NEW CEO FOR THE COCHRANE
COLLABORATION
The Cochrane Collaboration appointed a
Chief
Executive
Officer
(CEO)
to help “move forward to still higher
levels of achievement and impact”. We
wish Nick Royle all the best. He is to be
based in the UK Secretariat.
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MAKING CONTACT
Anyone interested in the work of the
Cochrane Consumer Network can join
the moderated mailing list by sending an
email to [email protected] with
“SUBSCRIBE” in the subject line.
Newsletters and information are shared
through this mailing list. It is also a good
place for review groups to ask for
consumers to comment on a protocol or
review. Communication within the
Cochrane Collaboration is generally, but
not exclusively, by email.
Communication IS important to the
Network. If you have any ideas about
where you would like to see CCNet
working, or suggestions about how we
can do things better please contact us
using the details at the end of this
newsletter.
CORRESPONDENCE
Communication: Carrick Henderson of
Western Australia says: “I have to agree
that communication between consumers
would certainly be of help to me. I
would say the concerns are accurate.
Also being able to get Medical
information would be a help.”
Ethics
concerns:
Professor
M
Weingarten from Tel-Aviv University,
Israel wrote that he and another
colleague were “thinking of writing an
article
proposing
that
Cochrane
reviewers assess the ethical quality of
the trials they include in their reviews”.
Editor: Does this raise issues for
consumers who comment on a review?
Susan Watson of TABS~Trauma and
Birth Stress, which is based in
Auckland New Zealand, has kindly emailed us with information on this
charitable trust and the very informative
newsletter that it produces. Information
is
available
by
e-mailing:
[email protected]]
Susan writes: “I have received details
about your group and wondered whether
you would be interested in what we have
been doing for the past five years.
Educating and teaching about post
traumatic stress disorder occurring after
childbirth….
We are very concerned about the
continued misdiagnosis and focus on
post natal depression hence our very
active status. Would love some
feedback. We are currently working on
our website, which will be up shortly.
BARCELONA 2003 XI COCHRANE COLLOQIUM
A reminder that the date for early registration at the next Colloquium is approaching:
30th March 2003. The Barcelona Colloquium has two different types
of registration:
- Registration for the full Colloquium is aimed to people involved in
any Cochrane entity.
- Registration for the second part of the Colloquium only is aimed at
people with a general interest in The Cochrane Collaboration.
You can find the registration form at:
http://www.colloquium.info/formcochrane.htm
Unfortunately the deadline for stipends has passed – we could remind only those on the
consumer mailing list ([email protected]).
4
Cochrane reviews count’ was identified
as an area for action. There was a
proposal to explore the setting up of an
“implementation
group”
for
the
Cochrane Collaboration. This group
would provide ideas about taking action
on Cochrane reviews e.g. prioritising the
top ten reviews on which action should
be taken.
THE TENTH COCHRANE
COLLOQUIUM IN STAVANGER
Excerpts from a report by David
Potter (UK)
You can’t compare colloquia; each is
unique.
The Consumer Network Satellite
Meeting: Our first day was a Consumer
Training Workshop. It began with a
critical appraisal session facilitated by
Kay Dickersin who is an excellent
teacher. We discussed all aspects of a
review from framing the question(s)
(foreground and background) through
protocol development to searching and
analysis. This was followed by a
discussion of Strategic Planning for the
Cochrane
Collaboration
Consumer
Network
Incorporated
(CCCNI).
Discussions were focussed on consumer
involvement, bridging gaps between
CRGs and Consumers and working
towards Consumers influencing policy.
The second consumer day “Hard science
meets Consumers” began with an update on DIPEX (Database of Individual
Patient
Experience)
by
Andrew
Herxheimer. It is hoped in future to
illustrate Cochrane reviews with video
clips about the relevant illness. The
afternoon session addressed issues
around consumer training and support
through a panel comprised of coordinating editors, Cochrane centre
directors and Consumers. ‘Making
Consumer business: A meeting was held
on the Governance of the now Cochrane
Collaboration
Consumer
Network
Incorporated (CCCNI). It was attended
by 21 Consumers from around the
world. Referring to the background
paper (a 50 page document about the
establishment and development of the
CCN) Hilda Bastian described the
complexity of the CCCNI within the
Cochrane Collaboration and the
challenge to structure and organise this
entity.
There was considerable
discussion ranging over development of
local branches, long-term structure of the
consumer network, the needs of
consumer
members
involved
in
Cochrane Review Groups, managing the
communication and networking needs of
members, funding the networking and
consumer support activities, etc., etc. It
was decided that these issues should be
progressed
by
a
reconstituted
Governance Working Group.
The meeting on the following day
discussed
communication
and
Governance issues further. There were
15 Consumers present and Hilda Bastian
talked briefly about the activities of the
last year and the financial report. She
then dealt with two important items:
 Under-representation of developing
countries
on
the
Cochrane
Collaboration Steering Group. A
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
communication to the Group will ask
them to look into this;
Some drugs are banned in some
countries but not others.
It is
important that this is addressed in
reviews that mention any of these
drugs. Consumers were asked to
take this forward to their own review
groups.
Because of concerns expressed, the
following statements were reaffirmed
regarding governance:
 Consumer Network (CCCNI) should
be seen to remain a firmly embedded
entity in the Cochrane Collaboration;
 Consumer Network should be
supported by its management to:
foster communications among its
international members in support of
the Cochrane Collaboration work;
and
provide
consumer-friendly
health information, involving its
members as fully as possible, to
those members and to the world
community of Consumers at large;
 Everything governing the activities
of the Consumer Network should
comply with the 10 principles of the
Cochrane Collaboration.
Cochrane Collaboration Colloquium
workshops: I attended my first workshop
as a facilitator together with Tina
Leonard (Review Group Coordinator for
the Skin Group) and Maxine Whitton (a
consumer with the Skin Group and also
a reviewer). Our workshop was entitled
“How to involve Consumers effectively
in a review group”. We each made a
short presentation that was followed by
discussion during which we heard about
the experiences of those present. We
talked about ways of recruiting and
involving Consumers and two examples
emerged which seem to help: a) the
appointment of a Consumer Coordinator,
who could be a Consumer, and b) the
establishment of a Consumer Panel.
The other workshops I attended were
“Introduction to Research Methodology”
and “Assessing the quality of component
studies of systematic reviews”. These
were both interactive and excellent. In
the former, we learned about the
different types of study: case control,
cohort, randomised controlled trial,
qualitative and cross-sectional studies.
In the latter, we discussed the use of
various scales for scoring quality. We
saw comparisons that suggested that,
although using what appeared to be an
objective method, the bias changed
depending on the scale used. I’ve
attended other workshops previously and
feel that I have been building my
knowledge and experience in a way that
will help me to deal with the problems
ahead in the review that I am
undertaking.
I have a simple message to Consumers:
“Get involved - YOU can make a
difference. It’s very rewarding.”
PROJECTS BEING UNDERTAKEN
Australian
Government
funding
(2002): The Cochrane Consumer
Network was successful in obtaining
money
in
Australia
from
the
Commonwealth Department of Health
and Ageing for a project on effective and
timely consumer participation in the
review process. As part of this project
some Australian consumers are being
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asked to comment on a review using
three different checklists currently in use
throughout the Collaboration. Then they
will complete an evaluation sheet
assessing their ability to present their
consumer perspective using these tools.
A workshop entitled ‘Consumer Meet
Reviewer’, for Cochrane consumers,
reviewers
and
health
support
organisation representatives, is also
planned at the end of March.
Funding for the Pregnancy and
Childbirth Group: The Cochrane
Collaboration has made available
funding to evaluate the work of the
Pregnancy and Childbirth Group
Consumer Panel in providing consumer
feedback on protocols, reviews and
updated reviews over the last three
years. Semi-structured interviews will be
used to determine what editors,
reviewers and consumers feel about how
the process works and whether they
believe the quality of the review has
changed as a result of consumer input.
This aspect of the work will identify
what works well and areas where
improvements can be made, and will
clarify critical questions to address in
more depth.
U.S. Cochrane Center: Susan Kaplan is
currently working on putting together a
"Consumer Coalition" of healthcare
consumer advocates from around the
U.S. They will meet on an annual basis,
disseminate information about evidencebased healthcare and strengthen the
voice of consumers in Cochrane. Susan
says “The aim is for awareness and
knowledge of evidence-based health care
to get out to healthcare consumers at all
levels
of
sophistication.”
[email protected]
THE COCHRANE HEALTH
INFORMATION SYSTEMS
This is centred around the web site
www.cochraneconsumer.com and aims
to help consumers make informed health
care decisions, by making health care
information and skills developed through
the Cochrane Collaboration accessible to
the general public.
Some consumers do not wish to be
involved in the process of preparing
systematic reviews of best evidence.
They may have a concern for their own
or others health, or belong to a consumer
group and work as consumer
representatives and advocates. These
people want the information obtained
from the Cochrane systematic reviews in
an easily accessible form. It holds
Cochrane review abstracts, synopses, the
’What’s New’ Digest and ’Hot Topics’.
CONTACT ADDRESSES FOR THE
CCNET
Janet Wale
2 Parry Street
Claremont, WA 6010
AUSTRALIA
Telephone: 61 8 9385 5528
Email: [email protected]
Liz Whamond
1421 Woodstock Road
Fredericton, New Brunswick
CANADA E3C 1P2
Email: [email protected]
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UPDATING YOUR CONTACT
DETAILS
We would appreciate you completing
the following so that we can contact
you with information relating to
Cochrane Consumers, for example
elections, projects and symposia or
colloquia. Please send to Janet
(address above) – e-mail or post.
Name:
Contact Address:
Postcode
Phone Number:
Email Address:
Area of work (Parent, Nurse, Librarian, Advocate etc):
Healthcare area(s) that concern you:
Cochrane Review Group , Field or Centre that you are associated with:
PRIVACY AGREEMENT
The Cochrane Consumer Network wishes to obtain personal information directly from you and from the
Cochrane entities. This information is used for monitoring of consumer participation in the Cochrane
Collaboration and is held in a database held by an appointed member of the Governing Council. It is a
requirement of the Collaboration that the UK Secretariat is kept informed of the current membership, for
voting. Details of number of members, gender and country of residence are provided to the Monitoring and
Registration Group annually, in a de-identified format.
Personal information will also be used to contact you. We can then ask if you wish to be contacted
regarding:
o
o
o
o
updates on the function of the Consumer Network and what we/you can offer;
for the purpose of elections;
to collect further information from you, to tap into the competencies of the membership;
for evaluation/surveys of, and research on/discussion of consumer participation and
methodology (de-identified information);
o developing consumer materials;
o receiving feedback from you on your input.
o in applications for funding (de-identified information);
o making personal contributions to the work of the CCNet, including the web site.
At no time will personal information be made available to an external body.
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