When to begin Consumer and Community Involvement
While consumer and community involvement can begin at any stage, as a general principle, involving consumers early and throughout the project is recommended. The ultimate goal is involvement of consumers and community members in identifying priorities, giving them the opportunity to influence what research and healthcare improvement projects are undertaken.
Early involvement of consumers in projects to improve health can provide many benefits, including:
Improved relevance of the project
Project leaders need to be able to demonstrate that their projects, which may be funded with public money, address the needs and priorities of patients and their families.
Involving consumers early in the process can help answer the question: will your project make a difference in their lives?
Enhanced project design and acceptability
People with lived experience or experience of caring for someone can provide meaningful input about recruiting participants to a study. They can also advise on whether your proposed methods are ethical and acceptable.
Selection of the most relevant outcome measures
When planning/designing your research project, consumers should have a say in what outcomes from the research are important to them.
Identifying opportunities for involvement throughout a project
When working with consumers to develop a project, plan how consumers can provide ongoing input to the project if it is successfully funded.
In the video below, Dr Virginia Vandall-Walker (Associate Professor, Faculty of Health Disciplines, Athabasca University Canada) talks about the importance of engaging consumers early in the research cycle.
As a general guide, involve all stakeholders as early as possible in the project. Involving consumers and front-line clinicians at the very beginning is key to understanding the problem/issue from multiple perspectives. Working in partnership with end users – including those with lived experience of the health system – generates ideas and helps us understand what’s important to them which is the ultimate goal of any research or project.