Supporting healthcare consumer engagement and involvement: what consumer-related activities are Cochrane Geographic Groups undertaking and how can these be strengthened?

Tags: Poster
Oliver J1, Morley R2, Cooper S3
1Cochrane South Africa, South African Medical Research Council; Cochrane Consumer Network Executive, 2Cochrane Central Executive Team; Cochrane Consumer Network Executive, 3Cochrane South Africa, South African Medical Research Council

Background: healthcare consumer involvement and engagement is an essential part of Cochrane’s work, as consumers are users of Cochrane evidence and their involvement enhances the transparency and trust of research produced and translation of research into policy and practice. The Statement of Principles for Consumer Involvement in Cochrane (2017) re-affirmed Cochrane’s commitment to involving consumers. The 2015 Centres Structure and Function review identified a range of 'Tier functions' that would support consumer involvement and engagement. To help Groups achieve this recommendation, the Cochrane Consumer Network Executive investigated the landscape of consumer-related activities amongst Groups and how these activities can be enhanced and supported.

Objectives: to determine what consumer activities Groups are currently undertaking, what activities they wish to do, and what support is required to conduct current and desired activities.

Methods: we searched Archie to obtain the list of Centres, Associate Centres and Affiliates. With Cochrane’s approval, we developed a survey that was emailed on 30 May 2018 to all Groups identified by the search. We sent a reminder on 6 August 2018. The survey consisted of three questions: 1) please list the consumer activities your Centre, Associate Centre or Affiliate is currently involved in; 2) please list the consumer activities you would like to undertake; and 3) do you need any support to undertake consumer activities. We stored the responses in a spreadsheet and analyzed them thematically.

Results: the search yielded 44 Groups (19 Centres, 23 Associate Centres, 2 Affiliates). The response rate was 54.5%. Five respondents indicated that they are currently not undertaking any consumer-related activities. The main consumer activities currently being undertaken included: translation of consumer-targeted materials; dissemination and communication of Cochrane evidence; building capacity among consumers; and the co-production of Cochrane evidence. Respondents highlighted various activities they would like to undertake: identifying key consumer advocates and their needs; developing and strengthening relationships with consumer groups; enhancing the coproduction of Cochrane evidence; building capacity to use evidence among consumers; and increasing dissemination activities. Respondents felt that undertaking current and desired consumer activities necessitates access to consumer materials; financial and training support; and opportunities to learn from other Groups.

Conclusion: to enable Groups to undertake consumer activities, increased support is required from Cochrane. Capacity strengthening and providing opportunities for the sharing of knowledge and experiences are important steps for better supporting consumer-related activities of Groups. The latter will help avoid duplication of effort and promote the cross-fertilization of ideas on how to design and implement consumer activities.