Does Cochrane have a plan for consumer participation?

As part of its funding for a consumer co-ordinator, The Cochrane Collaboration requested that the CCNet design a plan for consumer participation in Cochrane Reviews.  The Collaboration and CCNet hired consultants who interviewed consumers, editors and authors to identify any gaps in the current process and to determine the best solutions to support consumers within Cochrane.   

The Consumers' Executive has been working with the Consumer Co-ordinator, the CCNet Geographical Advisory Group, and members of CCNet and Cochrane to develop these solutions into a new support structure that will improve consumer integration within The Collaboration. All consumers and Cochrane Collaboration members are invited to comment.   

Since the needs of the consumers within Cochrane and CCNet are too broad for all issues to be addressed concurrently, key activities have been prioritized for the purpose of developing the Consumer Co-ordinator’s work plan. To support consumer participation and address current challenges, these projects are planned:

  • A new induction process for new consumers
  • A framework connecting consumer participants
  • The provision of accessible Cochrane products
  • Formalized management agreements for CCNet and its Executive

Induction process for new consumers

Issue: Communication void facing new consumers. Many consumers join the Consumer Network, as many as 15 every week, but activities and options for consumer involvement are limited.  Unless new consumers extensively browse the web for information about Cochrane, they are likely to be unaware of how consumers can improve the quality of Cochrane reviews.  Instead, Consumers receive notifications about commenting on reviews without receiving a comprehensive introduction to Cochrane.

Solution: The new induction process will integrate new consumers within Cochrane.   A new process for membership is in progress which more accurately collects consumer demographics to track consumer involvement. A ‘Welcome Packet’ will explain the opportunities available to consumers and explain the work of Cochrane.  New members will later receive training materials that introduce them to The Cochrane Collaboration, Understanding evidence-based healthcare and Using the Cochrane Library. Those interested in becoming consumer referees will be offered incremental training in the Cochrane Review process, the Role of the Consumer Referee, and a series of Guidelines on commenting. Additional roles within Cochrane will also be developed for consumers.

A framework connecting consumer participants

Issue: Isolation experienced by contributing consumers. Many consumers report that they feel alone in the review process.  When questioned further, they ask for feedback on their comments.  Some suggest the possibility of having discussions with reviewers via Skype. Consumers also find that they are not part of a community of consumers, because they have no mechanism for communicating with other consumers or building their skills as a peer reviewer.

Solution: A framework connecting consumer participants will be implemented. Consumers will soon have several models for participation in reviews and the opportunity to share concerns with other members of the CCNet community. A new consumer discussion board is in development for the external website that will allow consumers to meet other referees for a particular review group and to discuss the experience of a consumer referee.  Consumers will have the option of adding comments to the online blog on the CCNet website.  Tweets will provide consumers with notifications about consumer important reviews, events and Cochrane announcements. Also, a new guide for review groups (to be released in Madrid) provides helpful hints for reviewers to encourage repeat consumer participation by improving awareness of consumers needs. New opportunities for involvement, beyond the role of a consumer referee, will be explored to expand the impact of consumers within The Collaboration. 

The provision of accessible Cochrane products

Issue: Inaccessible/incomprehensible review content. In many countries, CCNet consumers are invited to comment on reviews which, once published, they will never be able to access, since they participate in organizations unable to fund individual memberships to the Cochrane Library, and live in countries without general public access. Many consumers find that the library does not provide information in their first language. Furthermore, those lucky enough to have access find that the library search terms and review titles are often unintelligible. Plain language summaries (PLS) are meant to help, but the present quality of the PLS is not monitored and standards for the PLS are vague. 

Solution: CCNet is developing a strategy for the provision of accessible Cochrane products.  CCNet has formed partnerships with Cochrane entities to collaborate on PLS improvements and ensure consumer participation. Several initiatives within CCNet and The Collaboration are in progress to develop the standards and guidelines for the PLS and consumer referee checklists. In addition, a new website, dedicated to consumers, will be developed to provide the information within The Cochrane Library that is of most interest to consumers. It will present plain language summaries in multiple languages.   The new consumer library will have new search criteria for easy access to information.

Formalized management agreements for CCNet and the Consumers' Executive

Problem: Transitional management structure. The Consumers Transitional Executive (CTE) was established for a period of 18-months to put systems in place that would support the management of CCNet activities. The CCNet organizational structure has adapted to include a paid Consumer Co-ordinator and a transitional executive.  New lines of accountability need to be determined and existing CCNet policies updated. 

Solution: Formalized management agreements are in development with the Consumers' Transitional Executive (CTE) and CCNet's Geographic Advisory Group (CCNetAdvisory). A CCNet work plan and objectives will being drafted for a multi-year period and the roles and responsibilities of the Consumers Executive will be clarified.  Elections for a permanent Consumers Executive will begin after the 2011 Colloquium. A new organizational chart (see attachment), which diagrams the management and accountability of CCNet, has been approved by both groups and has been submitted to CCNet and The Collaboration's Monitoring and Registration Committee (MaRC) for comment. Accordingly, the CTE and CCNetAdvisory have approved a revised remit and core functions for CCNet (see attachment) and updated its module (available online). The CTE has also proposed a governance plan to the CCNetAdvisory which will be submitted to CCNet and the MaRC for comment.

These ideas will be used to generate a work plan for CCNet over the next five year. If you have ideas or suggestions on this plan, please let us know. Submit your comments at the bottom of this blog.

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