CONSUMERS IN COCHRANE

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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 arent 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 (CONTD)

• 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

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THE CASE FOR CONSUMERS (CONTD)

• 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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CONSUMERS RIGHTS IN DEVELOPED COUNTRIES

• To be informed
• To safety
• To choose
• To be heard
• To redress
• To education
• To a healthy environment
• To satisfaction
• WHO

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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 (CONTD)

• 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 (CONTD)

• An orientation folder for consumers has been
  developed through Australian funding
• Five newsletters have been produced
• We continue to monitor the consumer e-mail list
• We have members on the Cochrane Steering Group
  and several sub-committees

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TODAY (CONTD)

• 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

• 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 COLLOQUIUMOTTAWA 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
• ccnet-contact_at_cochrane.de
• E-MAIL DISCUSSION LIST
• consumers_at_cochrane.de
• 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.