Consumer involvement in the Collaboration
Each year, the Steering Group takes the opportunity of its mid-year meeting – which coincides with the mid-year meetings of the Centre Directors and Co-ordinating Editors’ Executive – to conduct a half-day discussion and planning session on a topic of strategic importance to the Collaboration.
The purpose of this year’s session was for the Steering Group, entity leaders and members of the Cochrane Consumer Network (CCNet) to have a focused discussion on the strategic direction for consumer involvement within the Collaboration, in the context of the Strategic Review and the 2009 external review of CCNet, conducted by Bec Hanley. The intention was two-fold: first, to achieve clarity on consumer participation with particular regard to enhancing the quality and relevance of reviews, developing more consumer-oriented reviews, disseminating the work of the Collaboration more widely, and developing strong partnerships with appropriate national and international consumer organisations. Second, to discuss Collaboration support for sustainable consumer involvement.
In addition to Bec Hanley’s report, the session was informed by a background paper prepared by Dell Horey from the Cochrane Consumers and Communication Review Group, in consultation with a large number of people both inside and outside the Collaboration. The paper identified a variety of different consumer roles and activities in organisations such as the Collaboration, and suggested a number of ways in which these roles and activities could be initiated, promoted or supported. It also noted that not all consumers and consumer activities within the Collaboration are currently contained within CCNet, and that expansion of consumer activities in the ways outlined in the paper was beyond its existing resources. The paper proposed three different options for supporting consumer involvement in the future:
- To continue the current approach including the provision of project funding to CCNet to support consumer volunteers.
- To extend the remit of CCNet to assume funded support responsibility for all consumers across the Collaboration.
- To establish an administrative support unit to support CCNet, other volunteers, and other consumer activities not undertaken by CCNet.
The session was facilitated by Amanda Phillips, a professional meeting facilitator external to the Collaboration, who had conducted a session at the Singapore Colloquium in 2009 on supporting women in leadership positions. Participants were split into small, randomly selected groups to discuss the different options, including one group who participated in the session online. Following spirited debate it became clear that while there was little or no support for Option 1, the choice between Options 2 and 3 was less obvious. The Steering Group took the results of the session back to its second meeting of the week and, following further debate, decided on Option 2 as the way forward.
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.
The Steering Group is very pleased that a major commitment has now been made to improving support for consumer activities within the Collaboration. Nevertheless, this is the beginning of the process; there is still much work to be done to achieve the desired outcomes and we are looking to you all for your ideas and hard work as we move forward.
The full text of the Steering Group minutes on this issue can be accessed on https://www.cochrane.org/news/newsletters
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The Steering Group would like to take this opportunity to thank the following people for their contribution to this work so far:
- Janet Wale: Convenor of CCNet and former CCNet Representative on the Steering Group. Janet proposed that this year’s strategic session be dedicated to consumer involvement and provided invaluable input throughout the planning process.
- Dell Horey: author of the background paper
- Amanda Phillips: facilitator of the session
- The Advisory Group for the session: Bec Hanley, Dake Zhong, David Tovey (Chair), Gill Gyte, Giovanna Ceroni, Jay Rubin, John Santa, Kay Dickersin, Liliana Coco, Liz Whamond, Lorne Becker, Lucie Jones, Mike Clarke, Mingming Zhang, Nick Royle, Norman Swan, Silvana Simi, Sophie Hill, Tamara Rader, Victoria Thomas
- Barbara Warren, Claire Allen, Claudia Cattivera, Deirdre Beecher, Jane Nadel, Janie Gordon, Jordi Pardo, Nancy Santesso and Teenah Handiside, who interrupted their day (or night, depending on their time zone) to participate in the strategic session via remote conferencing.
- All the consumers who have contributed to the process