Partnering with stakeholders to produce the Cochrane Review: ‘Consumer engagement in health care policy, research and services: methods and effects’
Background
In 2016, Cochrane Consumers and Communication Group conducted an extensive consultation with consumers and other stakeholders to identify priority Cochrane Review topics for our Group. The topic of consumer engagement in health services was nominated as a priority by many people. As such, we selected one of our existing Cochrane Reviews, formerly titled, Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material as a priority review, meaning it needed to be updated.
A new group of authors has taken over the review, led by a team based at the University of South Australia and the South Australian Health and Medical Research Institute (SAHMRI) (See People involved). Their work on this review is actively supported by the SAHMRI Consumer and Community Engagement Committee and includes a comprehensive stakeholder engagement approach.
About the scope of the updated Cochrane Review
The author team and the stakeholder advisory group have together defined the objectives of this review. They have also refreshed the title, which is now, ‘Consumer engagement in health care policy, research and services: methods and effects’.
The primary objective of the review update is to assess the effects of consumer engagement in health care policy, research and services.
Secondary objectives are to explore whether differences between studies might explain any differences between the effects. We are specifically interested in differences in the:
- methods of consumer engagement (e.g. fact sheets, focus groups, patient advisory committees);
- stages (i.e. development, implementation, monitoring, evaluation) of health care policy, research and services in which consumers are engaged; and
- characteristics of consumer or professional participants (e.g. background, experience or training in consumer engagement).
You can read more about the plan for this review (called a protocol) at PROSPERO. Read the protocol here.
About the stakeholder engagement approach
The author team is working in partnership with consumers and other stakeholders to co-produce the review. This includes:
- a consumer co-author; and a
- 14-member stakeholder advisory group including people with the ‘collective expertise’ of potential users of the review, including: consumer representatives (both individuals and organisational), policy makers, health service managers, clinicians and researchers (see People involved).
Consumers and other stakeholders have been (or will be) invited to contribute to all major decisions in the review planning, conduct and dissemination.
Our progress
The author team has sought extensive advisory group input to inform and then refine the development of a new review plan for this update of the review, called a protocol. You can read the protocol for this review on PROSPERO (published July 2018).
The author team is now conducting the review, which it aims to publish by February 2019.
Can you help us find studies to include?
The team is currently searching for studies to include in the review. If you know of any potential studies (or know someone who might) please let them know (see Stay in touch, below).
The team are including randomised controlled trials that investigate the effects of consumer engagement in health services, policy or research. This could be studies that compare consumer engagement versus no consumer engagement, or studies that compare different types of consumer engagement to each other.
People involved
Stakeholder advisory group members
- Jane Austin, Health Performance Council Secretariat, South Australia
- Allan Ball, Women's and Children's Health Network, South Australia
- Alan Bevan, Consumer member, SAHMRI Consumer and Community Advisory Committee, South Australia
- Michael Cousins, formerly of Health Consumers Alliance of SA, South Australia
- Sarah Dalton, Agency for Clinical Innovation, New South Wales
- Ellie Hodges, Consumer member, SAHMRI Consumer and Community Advisory Committee, South Australia
- Lidia Horvat, Safer Care Victoria, Victoria
- Ellen Kerrins, Health Consumers Alliance of SA, South Australia
- Julie Marker, Former consumer member, SAHMRI Consumer and Community Advisory Committee, South Australia
- Michele McKinnon, SA Health, South Australia
- Penelope McMillan, Consumer member, SAHMRI Consumer and Community Advisory Committee, South Australia
- Maria Alejandra Pinero de Plaza, Consumer member, SAHMRI Consumer and Community Advisory Committee, South Australia
- Judy Smith, AM, Consumer member, SAHMRI Consumer and Community Advisory Committee, South Australia
- David Yeung, Researcher member, SAHRMI Consumer and Community Advisory Committee and Royal Adelaide Hospital and SA Pathology, South Australia
Authors
- Louise Wiles, University of South Australia
- Debra Kay, Consumer member, SAHMRI Consumer and Community Advisory Committee
- Julie Luker, University of South Australia
- Susan Hillier, University of South Australia
- Hilde Myrhaug, Oslo and Akershus University College of Applied Sciences
- Anneliese Synnot, La Trobe University
Publications and more information
- Protocol for this update of the review is available on PROSPERO (July 2018)
- Previous version of this review is available on the Cochrane Library
- Slide set from a presentation at Global Evidence Summit, Cape Town about the stakeholder engagement approach and evaluation plans for this review (September 2017)
- SAHMRI Consumer and Community Engagement Committee and resources
- About the Cochrane Consumers and Communication priority-setting project
Stay in touch
To keep up to date with progress for this review, join the Cochrane Consumers and Communication mailing list. We provide an update on key developments with our priority reviews in each edition.
If you have a question about this review, or can suggest some studies for inclusion, please contact Annie Synnot at a.synnot@latrobe.edu.au.