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CONSUMERS IN COCHRANE. PROVIDENCE, RI April 2004 LIZ WHAMOND. AN INFORMED CONSUMER?. THE CASE FOR CONSUMERS.

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consumers in cochrane

CONSUMERSIN COCHRANE

PROVIDENCE, RI

April 2004

LIZ WHAMOND

the case for consumers
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

the case for consumers cont d
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

the case for consumers cont d1
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)

consumer s rights in developed countries
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

WHO

why consumers in cochrane
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)
in the beginning
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
in the beginning cont d
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)
today
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)
today cont d
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 e-mail list
  • We have members on the Cochrane Steering Group and several sub-committees
today cont d1
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
ccnet website
CCNET WEBSITE
  • Helps review groups find consumers
  • Helps consumers find a role
  • Means of communication
  • Contains information on training
ways consumers can contribute
WAYS CONSUMERS CAN CONTRIBUTE
  • Consumer referees
  • Writing and commenting on synopses
  • Handsearchers
  • Translators
  • Dissemination
  • Reviewers
  • Represent consumers on advisory groups
  • Etc.
current challenges
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)
12 th cochrane colloquium ottawa october 2 6 2004
12th COCHRANE COLLOQUIUMOTTAWA – OCTOBER 2 – 6, 2004

SEVERAL WORKSHOPSFOR 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
contact information
CONTACT INFORMATION
  • CONTACT E-MAIL:

ccnet-contact@cochrane.de

  • E-MAIL DISCUSSION LIST:

consumers@cochrane.de

  • WEB ADDRESS:

http://www.cochrane.org/consumers

acknowledgements
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.