Engaging consumers and other stakeholders in a Cochrane Review: a mixed-methods evaluation

Session: 

Oral session: Patient or healthcare consumers involvement and shared decision-making (3)

Date: 

Sunday 16 September 2018 - 14:40 to 14:50

Location: 

Ochil 2

All authors in correct order:

Synnot A1, Kay D2, Wiles L3, Hillier S3, Tong A4, Hill S1
1 La Trobe University, Australia
2 Consumer representative, Australia
3 University of South Australia, Australia
4 University of Sydney, Australia
Presenting author and contact person

Presenting author:

Anneliese Synnot

Contact person:

Anneliese Synnot
Abstract text
Background:
Consumers and other stakeholders, like policy-makers and clinicians, increasingly partner with researchers on systematic reviews (SRs). These activities are rarely evaluated, limiting our ability to understand and replicate good practice. An author team is currently partnering with the South Australian Health and Medical Research Institute (SAHMRI) Consumer and Community Engagement Committee and other stakeholders to update a Cochrane SR.

Objectives:
To document how stakeholders were involved in the SR, and how their engagement influenced the SR and the stakeholders and authors.

Methods:
A mixed-methods evaluation is running alongside the SR update. Interviews with the 15 stakeholders and 4 authors are conducted at key points, supported by meeting observation and project document analysis. To date, we have conducted 26 interviews, exploring people's experiences of the process and opportunities for improvement. We are using Cochrane's ACTIVE framework to describe the engagement and thematic analysis to explore impacts.

Results and conclusions:
The aim of engaging stakeholders is to optimise SR currency and relevance. Stakeholders include a consumer author and an advisory group (8 consumers; 7 people from clinical/service/policy/research) recruited through existing networks for their collective expertise. Using in-person/phone interviews and group teleconferences, stakeholders reviewed the existing SR to offer suggestions for the update, and later reviewed a new protocol. Future input is planned in analysis, write-up and promotion. So far, stakeholders have altered the rationale, scope, methods, terminology, timeline and planned dissemination. Where possible, authors have found creative solutions to address feedback. Stakeholders report that the process is genuine and respectful. Benefits include learning about and shaping the latest research and seeing 'inside' a Cochrane SR. Authors have enjoyed the process and report benefits of greater confidence in the SR scope and rationale and applying consumer engagement learning to other work. Both groups report the time involved and Cochrane 'constraints' to be challenges. Prospective evaluation has allowed stakeholders to shape the engagement process.

Consumer involvement:
We planned this study with our consumer author, drawing from the SAHMRI Consumer and Community Engagement Framework.

Relevance to patients and consumers: 

Healthcare consumers and other stakeholders are increasingly being engaged in research, including systematic reviews. This in-depth evaluation of consumer engagement in a Cochrane Review will provide much needed guidance for systematic reviewers about how to approach consumer engagement in ways that are genuine and lead to more relevant reviews for users. We developed this statement with our consumer author.