1 CONSUMERS IN COCHRANE PROVIDENCE, RI April 2004 LIZ WHAMOND

2 AN INFORMED CONSUMER?

3 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

4 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

5 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)

6 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

7 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)

8 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

9 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)

10 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)

11 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

12 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

13 CCNET WEBSITE Helps review groups find consumers Helps consumers find a role Means of communication Contains information on training

14 WAYS CONSUMERS CAN CONTRIBUTE Consumer referees Writing and commenting on synopses Handsearchers Translators Dissemination Reviewers Represent consumers on advisory groups Etc.

15 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)

16 12 th 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

17 CONTACT INFORMATION CONTACT DISCUSSION LIST: WEB ADDRESS:

18 THE END IS NEAR

19 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.