Cochrane Consumer Network

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Cochrane Consumer Network

• CCNet

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280 members in 25 countries

• Australia, New Zealand, China, Thailand, India,
  Malaysia, Israel, Spain, United Arab Emirates,
  Kenya, Zimbabwe,Nigeria, Italy, Seychelles,
  Netherlands, Mexico, South Africa, Germany,
  France, Denmark, Norway, Uganda, UK, Canada, USA

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Managed by an elected governing council

• Godwin Aja (Nigeria), Don Baumber (Australia),
  Gill Gyte (UK), Janet Wale (Australia), Liz
  Whamond (Canada) and Sara Yaron (Israel)

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We have different motivationsfor joining the
Collaboration

• Personal experience with illness
• Work in consumer advocacy
• Interest in the scientific basis of medical
  practice

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Why do we need a CCNet

• To encourage people without medical training to
  contribute to the Cochrane Collaboration
• To provide an entry point for consumers
• Training workshops and e-training
• To educate each other via e-mail

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What we can provide

• Clarity to the systematic reviews
• Perspective of the patient
• A means of dissemination
• Ideas for future reviews

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Consumers are thoroughly integrated into the
process

• Cochrane welcomed consumer participation from the
  beginning
• Were not the ladies auxiliary
• Can conduct reviews
• Two consumer reps on steering group
• Represented on most colloquium panels

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Ways to participate

• Peer reviewers, editors, translators
• Hand searchers, reviewers, fundraisers
• Disseminators
• Serving on committees
• Attendance at annual colloquium

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How we stay connected

• Discussion e-list of about 280
• Source for review groups w/o consumers
• E-newsletters
• Articles sent biweekly

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Most of us are peer reviewers

• They need us!!

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Why Cochrane needs us

• Most read only the abstract including consumers,
  doctors, media
• Our minds arent cluttered with methodology,
  statistics, etc. can pick up contradictions
• Outcomes have different significance to patients.

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Jargon in the abstract

• From Herbal Therapy for Osteoarthritis
• Reviewers Conclusions The evidence for
  avocado-soybean unsaponifiables in the treatment
  of osteoarthritis is convincing.

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unsaponifiables

• Incapable of being saponified. Used especially of
  the portion of oils and fats other than the
  glycerides (fractions, such as steroids or
  vitamin A)
• Merriam
  webster
• 3rd
  international dictionary

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Challenging the jargon

• Statistically significant (to whom?)
• Number needed to treat NNT
• Relative risk reduction vs absolute RR

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Would you take this drug if

• It reduced your odds of dying of heart disease by
  24 in the next 7 years.
• Your odds of dying of heart disease in the next 7
  years without the drug were 2, and the drug
  reduced the odds to 1.6.

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Huh???

• We found that use of statins was associated with
  a consistent and clinically meaningful but
  nonsignificant reduction in hip fracture for
  prospective observational studies of older
  women.

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Feedback to your comments

• Some groups just thank you
• Some will give detailed responses to each comment

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What if your excellent comments are ignored?

• Send a comment/criticism to Cochrane Library
• Reviewers must respond to a com/crit
• The exchange remains in library

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How to get started

• E-mail ccnet-contact_at_cochrane.de to obtain
  membership form
• consumers-request_at_cochrane.de type subscribe in
  subject box to join the discussion list