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THE COCHRANE COLLABORATION CONSUMER NETWORK

THE COCHRANE COLLABORATION CONSUMER NETWORK. (CCNet). The Cochrane Collaboration The Consumer Network (CCNet) CCNet and ‘Informed Patients’. . The Cochrane Collaboration. Preparing, maintaining and disseminating systematic reviews of the effects of health care.

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THE COCHRANE COLLABORATION CONSUMER NETWORK

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  1. THE COCHRANE COLLABORATIONCONSUMER NETWORK (CCNet) Gill Gyte

  2. The Cochrane Collaboration • The Consumer Network (CCNet) • CCNet and ‘Informed Patients’ Gill Gyte

  3. The Cochrane Collaboration Preparing, maintaining and disseminating systematic reviews of the effects of health care Gill Gyte

  4. The CochraneCollaboration Chinese Nordic Dutch U.K. Canadian German Italian Spanish USA Australasian South African Brazilian Gill Gyte

  5. Ten Principles • Collaboration • Building on the enthusiasm of individuals • Avoiding duplication • Minimising bias • Keeping up to date • Ensuring relevance • Ensuring access • Continually improving the quality of its work • Continuity • Enabling wide participation Gill Gyte

  6. Acute Respiratory Infections Dementia & Cognitive Impairment Diabetes Effective Professional Practice Fertility Regulation Muskuloskeletal Neonatal Oral Health Parasitic Disease Pregnancy & Childbirth Schizophrenia Stroke Tobacco Addiction Review Groups (Examples) Gill Gyte

  7. Consumer Network • Registered in 1995 – based in Australia • Support from the Australasian Cochrane Centre (ACC) • Began with 25 members - international • Branches in Africa, UK etc Gill Gyte

  8. Consumer Network • 2001 - external funding for a website • 2002 - ACC unable to fund anymore • 2003 - website split away to become ‘Informed Health Online’ • 2003 - CCNet about 300 members Gill Gyte

  9. Consumer Network (CCNet) • CCNet - 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 set up new website Gill Gyte

  10. Gill Gyte

  11. CCNet website www.cochrane.org/consumers • Helps review groups find consumers • Helps consumers find a role • Means of communication • Information on training Gill Gyte

  12. Ways consumers can contribute • Consumer referees • Writing and commenting on synopses • Handsearchers • Translators • Dissemination • Reviewers • Represent consumers on advisory groups • Etc. Gill Gyte

  13. Consumers’ contribution “Ideally, consumers have an opportunity within review groups to influence the agenda; to identify priorities for what areas ought to be reviewed, the outcomes that ought to be examined, the interpretation and implications that are drawn from the results” Chris Silagy (1960-2001) Gill Gyte

  14. Identifying priorities “Could I improve my recovery after total knee replacement surgery with pre-surgery exercise programs, if so what programs are available or are recommended?” Gill Gyte

  15. Identifying outcomes “If I am offered the choice of general anaesthesia or an epidural, I do not particularly want to know how much blood is lost during surgery or the actual time of anaesthesia. I want to know levels of pain and discomfort or stress, muscle cramping, nausea and vomiting, how long it will be before I am helped to my feet and any other consequences (adverse effects) of anaesthesia.” Gill Gyte

  16. Interpreting results “It would be helpful to readers to report in the synopsis and the abstract that the shortening of symptoms found was by about 1/4 day. Many consumers felt this meant the treatment was not effective in real life terms, so reporting this information specifically in the synopsis and abstract would give each reader the information to enable them to judge for themselves.” Gill Gyte

  17. CCNet and ‘Informed Patients’ Training to empower consumers: • Critical appraisal skills (CASP) • Commenting on Cochrane reviews from a consumer perspective Gill Gyte

  18. Critical appraisal skills and commenting on Cochrane reviews • Workshops at Colloquia • Workshops in individual countries • Distance learning • E-training Gill Gyte

  19. Gill Gyte

  20. Synopses • Consumer summary of the Cochrane review • An integral part of a Cochrane review • 25 word title and 100 words of text • All reviews to have them by 2005 Gill Gyte

  21. Dissemination • Voluntary support organisations • Cochrane website • National Electronic Library for Health • Wiley • Informed Health Online Gill Gyte

  22. “I am determined that no matter how much I trust my treating doctors, I want to be assured that the decisions we make together are based on as much evidence as is in existence at the time. I believe that is my fundamental right, and a right of others in a similar situation.” Chris Silagy, 1960-2001 Gill Gyte

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