CCNet in KEYSTONE

From CCNet External Review ( October 2009) CCNet’s ROLE As reported by Review Groups and by consumers: *Commenting on reviews, protocols, PLSs Reported frequently by consumers, but less frequently by Review Groups: * Raising awareness of evidence based health care * Recruiting other consumers * Disseminating information about reviews BARRIERS * Lack of funding * Difficulties to be involved in CCNet 61 % of reviewers not in CCNet Lack of coordination Language barriers RECOMMENDATIONS *A part-time administrative support funded centrally * A quality improvement process for consumer input to reviews * The CC to develop a Consumer Participation Plan

The structure and function of CCNet was a major discussion item for Auckland (March 2010): In preparation for this session : * A Consumer Involvement Advisory Group (CIAG, Dec 2009-March 2010) *David Tovey and Lorne Becker to chair the group *The preparation of background papers (Dell Horey 2010) (Bec Hanley 2010)

Steering Group Bulletin ( Auckland/March 2010): It was agreed that the future focus for CCNet should be two-fold: to support consumers and their entities within and across the Collaboration; and to explain the role of the Collaboration and of evidence in health care to consumers and their representative organizations globally. It was also agreed that achieving this focus will require additional resources, as well as some changes in the structure and functions of CCNet. To address the resource issue, the Steering Group approved funding for a full-time consumer co-ordinator for the Collaboration, together with associated administrative support needed for such a position. Issues of how the remit and structure of CCNet should change to incorporate these new responsibilities were not discussed in detail, but a subgroup of the Steering Group, including its two CCNet Representatives, both Co-Chairs, the Editor in Chief and the Chief Executive Officer, were identified to work on the next steps.

Consumer Involvement Advisory Group CIAG met in teleconference 5 times and made a series of more detailed recommendations:  Ensure new consumers are contacted by and engaged in CRG  An effective database  Circulate a list of new title to consumers on a weekly basis  Ways of making CCNet site / network more friendly  Help CRG is to recruit consumers  Recognising there is no single model for successful consumer involvement  Develop more on line training  Work with other organizations to encourage the dissemination of the reviews/PLS  Work to convince those within the CC who may be sceptical about the value of consumer involvement  Create a dedicate position

A transitional Executive was appointed (May 2010): Liz Whamond, Canada - Chair Mingming Zhang, China Gill Gyte, UK Godwin Aja, Nigeria Silvana Simi, Italy Janet Wale, Australia (resigned June) Jane Nadel, USA (resigned June) Catherine McIlwain, UK, as CCNet coordinator, since 22 Sept This signifies a return to the original Governing Council structure registered with the MaRC. The roles and responsibilities of previous convenor/co-ordinator, chairperson, treasurer, secretary, administrator are consequently absorbed by the transitional executive.

Achievements  June/ Sept 2010: CTE met by teleconference and discussion to produce background papers for the 2010 Colloquium in Keystone.  October 2010: The CTE will present a governance plan for consumers comment by the end of November 2010.