Consumer engagement critical to success in an Australian research project: Reflections from those involved

Anneliese J. Synnot, Catherine L. Cherry, Michael P. Summers, Rwth Stuckey, Catherine A. Milne, DIanne B. Lowe, Sophie J. Hill

Research output: Contribution to journalArticleResearchpeer-review

11 Citations (Scopus)


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. Journal compilation

Original languageEnglish
Pages (from-to)197-203
Number of pages7
JournalAustralian Journal of Primary Health
Issue number3
Publication statusPublished - 1 Jan 2018


  • consumer participation
  • multiple sclerosis
  • online health information
  • patient and public involvement
  • research involvement

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