CONSUMERS IN
COCHRANE
PROVIDENCE, RI
April 2004
LIZ WHAMOND
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AN INFORMED CONSUMER?
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THE CASE FOR CONSUMERS
“Patients with long term medical conditions
become the experts on living with those
conditions, even if they aren’t necessarily the
experts on the science of their treatment. They are
also repeated users of the health care system and
are an incredibly under-used resource in how that
system actually works for, or sometimes against,
them.”
Forbes B.A.
BMJ 28 March 2003
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THE CASE FOR CONSUMERS
(CONT’D)
“We are usually extremely knowledgeable about the
impact of ill-health on our lives and the quality of our
lives. These factors often influence our decision making
processes for treatment and care and, when available,
social health care. We can also point out where and when
health care systems are not working”.
McCrory P.
BMJ 28 March 2003
4
THE CASE FOR CONSUMERS
(CONT’D)
THE PEOPLE HAVE THE RIGHT AND
DUTY TO PARTICIPATE
INDIVIDUALLY AND
COLLECTIVELY IN THE PLANNING
AND IMPLEMENTATION OF THEIR
HEALTH CARE
(WHO statement, 1978)
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CONSUMER’S RIGHTS IN
DEVELOPED COUNTRIES
•
•
•
•
•
•
•
•
To be informed
To safety
To choose
To be heard
To redress
To education
To a healthy environment
To satisfaction
WHO6
WHY CONSUMERS IN COCHRANE?
• To increase consumers’ capacity to participate
• To make information accessible to consumers
• To share good evidence-based information with
other consumers
• To make a difference in Cochrane reviews and
healthcare research
• To get past language barriers
• Consumer inclusion at every step of the health
system (patient-centred medicine)
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IN THE BEGINNING
• IN 1993 WAS THE FIRST STEERING
COMMITTEE OF THE COLLABORATION
(HILDA BASTIAN REPRESENTED
CONSUMERS)
• IN 1994 THE COCHRANE CONSUMER
NETWORK WAS PROPOSED AND A SECOND
CONSUMER POSITION ON THE STEERING
COMMITTEE WAS GRANTED
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IN THE BEGINNING (CONT’D)
• IN 1995 THERE WERE 25 MEMBERS IN
THE NETWORK
• THE INTERIM COORDINATING
COMMITTEE CONSISTED OF JEAN
JONES (CANADA), FRAN VISCO (USA),
ROS WOODS (AUSTRALIA) AND
HILDA BASTIAN (AUSTRALIA)
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TODAY
• THERE ARE MORE THAN 300 MEMBERS
• IN JANUARY OF 2003 THE NEW
COORDINATING TEAM TOOK OFFICE
• COORDINATING TEAM MEMBERSHIP
INCLUDES: Godwin Aja (Nigeria), Don
Baumber (Australia), Samuel Ochieng (Kenya),
Silvana Simi (Italy), Janet Wale (Australia), Liz
Whamond (Canada) and Sara Yaron (Israel)
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TODAY (CONT’D)
• An orientation folder for consumers has
been developed through Australian funding
• Five newsletters have been produced
• We continue to monitor the consumer email list
• We have members on the Cochrane Steering
Group and several sub-committees
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TODAY (CONT’D)
• A paper addressing how CCNet will become, and
function as, a field is in preparation for the Monitoring
and Registration Group of the Cochrane Collaboration
• We are now mainly concerned with supporting and
empowering consumers to contribute to the work of the
Collaboration in ‘preparing, maintaining and
disseminating up-to-date reviews of health care
interventions’
• CCNet website – work is underway on the consumer
pages – we appreciate feedback and ideas
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CCNET WEBSITE
•
•
•
•
Helps review groups find consumers
Helps consumers find a role
Means of communication
Contains information on training
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WAYS CONSUMERS CAN
CONTRIBUTE
•
•
•
•
•
•
•
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Consumer referees
Writing and commenting on synopses
Handsearchers
Translators
Dissemination
Reviewers
Represent consumers on advisory groups
Etc.
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CURRENT CHALLENGES
• We currently operate without an Executive
Director (or Convenor) – all work is carried out by
the Coordinating Team
• Lack of funding
• We need greater consumer involvement in order to
be able to handle the requests we get from review
groups for consumer reviewers (we need to get the
word out and grow involvement on the discussion
list)
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12th COCHRANE COLLOQUIUM
OTTAWA – OCTOBER 2 – 6, 2004
SEVERAL WORKSHOPS FOR CONSUMERS ARE PLANNED
INCLUDING:
•
•
•
•
Making sense of scientific evidence: a workshop for consumers and
people collaborating with consumers (CASP)
Development of consumer synopses/ summaries
Understanding the results of Cochrane reviews from a consumer
perspective
Enhancing confidence in commenting on reviews for consumers
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CONTACT INFORMATION
• CONTACT E-MAIL:
[email protected]
• E-MAIL DISCUSSION LIST:
[email protected]
• WEB ADDRESS:
http://www.cochrane.org/consumers
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THE END IS NEAR
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ACKNOWLEDGEMENTS
I would like to thank the following members the
CCNet Coordinating Team:
• Gill Gyte – England
• Silvana Simi – Italy
• Janet Wale – Australia
These individuals have contributed greatly to this
presentation.
Also thanks to the Kay Dickersin and the US
Cochrane Center for inviting me here for this
meeting.
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