Consumer engagement critical to success in an Australian research project: reflections from those involved
Anneliese J. Synnot A B H , Catherine L. Cherry C D E , Michael P. Summers A , Rwth Stuckey F , Catherine A. Milne G , Dianne B. Lowe A and Sophie J. Hill A
+ Author Affiliations
- Author Affiliations
A Centre for Health Communication and Participation, School of Psychology and Public Health, College of Science, Health and Engineering, La Trobe University, Kingsbury Drive, Bundoora, Vic. 3068, Australia.
B Cochrane Australia, School of Public Health and Preventive Medicine, Monash University, Level 4, 553 St Kilda Road, Melbourne, Vic. 3004, Australia.
C Centre for Biomedical Research, Burnet Institute 85 Commercial Road, Melbourne, Vic. 3004, Australia.
D Department of Infectious Diseases, The Alfred Hospital and Monash University, The Burnet Institute, 85 Commercial Road, Melbourne, Vic. 3004, Australia.
E Faculty of Health Sciences, University of the Witwatersrand, Private Bag 3, WITS 2050, Johannesburg, South Africa.
F Centre for Ergonomics and Human Factors, School of Psychology and Public Health, College of Science, Health and Engineering, La Trobe University, Kingsbury Drive, Bundoora, Melbourne, Vic. 3086, Australia.
G Sydney Health Ethics, School of Public Health, University of Sydney, Sydney, NSW 2006, Australia.
H Corresponding author. Email: a.synnot@latrobe.edu.au
Australian Journal of Primary Health 24(3) 197-203 https://doi.org/10.1071/PY17107
Submitted: 10 August 2017 Accepted: 8 January 2018 Published: 7 June 2018
Journal compilation © La Trobe University 2018 Open Access CC BY-NC-ND
Abstract
This paper describes the people, activities and methods of consumer engagement in a complex research project, and reflects on the influence this had on the research and people involved, and enablers and challenges of engagement. The 2.5-year Integrating and Deriving Evidence Experiences and Preferences (IN-DEEP) study was conducted to develop online consumer summaries of multiple sclerosis (MS) treatment evidence in partnership with a three-member consumer advisory group. Engagement methods included 6-monthly face-to-face meetings and email contact. Advisory group members were active in planning, conduct and dissemination and translational phases of the research. Engaging consumers in this way improved the quality of the research process and outputs by: being more responsive to, and reflective of, the experiences of Australians with MS; expanding the research reach and depth; and improving the researchers’ capacity to manage study challenges. Advisory group members found contributing their expertise to MS research satisfying and empowering, whereas researchers gained confidence in the research direction. Managing the unpredictability of MS was a substantive challenge; the key enabler was the ‘brokering role’ of the researcher based at an MS organisation. Meaningfully engaging consumers with a range of skills, experiences and networks can make important and unforeseen contributions to research success.
Additional keywords: consumer participation, multiple sclerosis, online health information, patient and public involvement, research involvement.
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