CCNet Structure and Function Review

How do Consumers Fit into Cochrane? The Consumer Structure and Function Review

Strategy to 2020

Strategy to 2020 is Cochrane’s response to the challenges of maintaining its position as a leading provider of evidence-based health information in a more competitive, complex and demanding environment. As part of its Goal 4 ‘Building an effective and sustainable organisation’, we have said ‘We will review and adjust the structure and business processes of the organisation to ensure that they are optimally configured to enable us to achieve our goals’.

Purpose of the Review

The purpose of the Consumer Structure and Function Review is to evaluate how well the current functions and structures of the Consumer Network support the strategic goals of Cochrane, as outlined in Strategy to 2020, and to consider what changes are needed to ensure the organisation has the right structures in place to achieve its mission. The review pays particular attention to those goals in Strategy to 2020 in which the Consumer Network plays a central role i.e. supporting the involvement of consumers in the production and dissemination of systematic reviews.

How the information gathering element of the review was done

The main elements of the review were:

  • A survey of the Organisation’s 53 Review Groups, about the nature and extent of consumer involvement in their work
  • A survey of the 1338 members of the Cochrane Consumer Network, about their experience of volunteering for Cochrane and future aspirations and needs
  • An analysis of the information held by the organisation about its consumer volunteers
  • A literature review of published papers about consumer involvement in Cochrane and in systematic reviews more broadly
  • A survey of the views of external partners
  • Internal consultation with Centres

What the information gathering found

Review Groups Survey

  • Review Groups overwhelmingly value the involvement of consumers
  • There are good practice examples of involvement to be found throughout the network
  • Review Groups would value support with targeted recruitment
  • There needs to be an effort better to engage with Review Groups in order to facilitate improved involvement across a range of issues including recruitment, training, communication, resources and innovation in involvement.

Consumer Survey

  • Consumer Network members are a disparate group, with complex and multiple ways of identifying themselves in their interactions with Cochrane.
  • They are motivated and united by an interest in evidence-based medicine and a desire to contribute to the production and dissemination of Cochrane evidence.
  • Their contributions are largely made by commenting on abstracts and Plain Language Summaries
  • There is an unmet demand to do more, including contributing to the whole research cycle, attending meetings and the training to achieve this.
  • Communication with consumers could be improved
  • Overall satisfaction levels with the Consumer Network are lower than for the organisation as a whole

Consumer Membership Analysis

  • There are high levels of uncertainty about the levels of consumer involvement in Cochrane and there is a clear need to know more.
  • Consumers are largely found in the developed and English speaking world.
  • Social media offers interesting ways of communicating with a wider range of existing and potential consumers.
  • The new “Cochrane Membership” offers exciting opportunities and some challenges

 External Partners’ Survey

  • The views of external partners are key given the complexity of the environment Cochrane functions.
  • Many organisations have an expectation about the level and nature of consumer involvement in the work of Cochrane.
  • The survey of external partners reinforces many of the key messages identified elsewhere.
  • In particular there are expectations that consumers will be involved in the prioritisation of future important reviews, the identification of outcomes important to patients and dissemination

 Centres Consultation

  • The Centres Executive supports the principle of an increased role in the involvement of consumers and the establishment of a network of “Consumer Champions” based at Centres

Overall the review concludes that Cochrane pioneered the involvement of consumers in research and presently there are over 1330 Archie registered Consumers, with an active core of between 300 and 500 regularly involved in the production of health evidence. This is something to celebrate; however practice across Cochrane varies and, with some notable exceptions, it has not kept pace with the world outside Cochrane. Review Groups and Consumers are looking for support to develop practice in involvement.

 Future priorities

The review identifies seven areas for work to take the organisation forward to 2020:

  1. Develop a Cochrane statement of principle.
  2. Integrate consumer involvement throughout Cochrane structure.
  3. Support consumer involvement throughout the research cycle.
  4. Engage with Cochrane Membership for the full benefit of consumer involvement.
  5. Build on and develop programmes of support for Cochrane consumers.
  6. Improve communication with consumers and about consumer involvement.
  7. Build effective external partnerships

What next

The report went to the Cochrane Steering Group in Vienna in October 2015, where it was approved.  Read the resulting Cochrane Consumer Delivery Plan to 2020 here.