CCNet shares its experiences with the GIN and HTAi Patient and Public Involvement Groups

International organisations other than The Cochrane Collaboration that work to support evidence-based health care worldwide are now making leaps forward in involving patients and the public in both their processes and input into their products. Two of these organisations are Guidelines International Network (GIN), through its Patient and Public Working Group led by Antoine Boivin (Canada/Netherlands); and the Health Technology Assessment International (HTAi) Patient Involvement Group led by Karen Facey (UK). CCNet members are represented on both these Working Groups. Carol Sakala (US) and Judi Strid (New Zealand) are on the GIN group, and Janet Wale is on the HTAi group, through their involvement in consumer activities in their own countries.

Cochrane Consumer members outside their meeting room at the Singapore Colloquium

Janet Wale was invited by GIN (as CCNet Convenor) to attend the recent GIN conference in Lisbon (1 – 4 November 2009) to share the experiences and gained knowledge of consumers in The Cochrane Collaboration, through CCNet. Her input was much strengthened by this year’s External Review of Consumers and of CCNet in working with Cochrane Review Groups in the development of systematic reviews and the plain language summaries that accompany them. This Review is proving valuable in helping Cochrane consumers and CCNet move forward. In true evidence-based style, it can provide the basis of discussions about consumer involvement in the Collaboration. This is one of the topics at the mid-year special session of the Steering Group, Co-ordinating Editors’ Executive and Centre Directors in March 2010 in Auckland.

The final report from the External Review of Consumers and CCNet, with a focus on Review Groups, is available at cochrane.org/consumers/happenings.htm. This External Review was reported widely at the Singapore Colloquium and is helping CCNet address recommendations of the Review of The Cochrane Collaboration. We thank all those who completed the surveys that formed the basis of the Review, as well as the multi-stakeholder Advisory Group whose members gave their valuable time and depths of experience so generously. Forty-seven Review Groups responded to the Review Group survey. This was directed at Managing Editors as these are the people consumers generally work most closely with. It is exciting to be part of an evolving organisation that is working to apply more systematic approaches to its decision-making.

Janet Wale
CCNet Convenor