Module 1


Embedding Consumer and Community Involvement in research and healthcare improvement

Intro sentence: Consumers can engage with health professionals and researchers at all stages of a project, including identifying and setting priorities, planning, designing and managing the project, conducting the study, and disseminating and implementing the findings .

The research or project cycle

Examples of consumer involvement include:

  • Identifying and prioritising research priorities
  • Understanding the problem from consumer perspectives and co-designing the nature of the solution or project (ie, before a project is conceived)
  • Co-designing interventions, projects and research
  • Designing and managing research by reviewing and providing feedback on patient education material
  • Undertaking interviews or focus groups with research participants
  • Disseminating findings through consumer and community networks
  • Implementing by advising how the results should be shared and applied in clinical practice
  • Evaluating impact by providing input into impact measurements and evaluation tools.

In the video below, Dr Virginia Vandall-Walker (Associate Professor, Faculty of Health Disciplines, Athabasca University Canada) speaks about priority setting with community stakeholders.

The example provided relates to chronic kidney disease:

It’s a really fabulous experience when you get into a room…and you have health professionals in their jargon, in their space, using what tools they have in their grasp and then you have consumers talking about the lived experience and what that’s like.  Then when they do fuse, when those world views do fuse and you find health professionals negotiating the way and starting to say things like, “What about if we did this?" Or “What about if we changed it to that” or “What about if we did that thing first,” and you can just see the consumers’ world exploding.  It’s a lovely, lovely experience when you see that fusion… it’s that positive energy around coming to a consensus idea of something.
Dr Rhonda Garad knowledge translation research fellow 

Victorian Comprehensive Cancer Centre, Consumer and Community Involvement Case Studies

Patient-Centred Outcomes Research Institute (PCORI) (2016), Engagement Rubric for Applicants