What is consumer involvement in research?

Consumer involvement (or engagement) is when people with lived experience work in partnership with researchers, clinicians, organisations, policy makers and funding bodies to shape decisions about what research is done and how.

You can read our consumer involvement strategy or click here for an Easy to Read summary of our consumer involvement strategy.

You can download the Terms of Reference for our Consumer Councils here.

Why is your lived experience important?

We believe that our research is better with consumer involvement and our findings better meet the needs of people with a lived experience of disability and their families. We value the community voice and our collaborations with diverse consumer partners.

Your lived experience:

• Helps researchers to do research better (improves the quality)
• Leads to research that is about what matters most for people with disability and their families (increases the relevance)
• Brings results that better meet the needs of people with disability and their families (more meaningful outcomes)
• Supports the research findings to arrive faster to real life outcomes (knowledge translation)

Why it is a good idea for you to become a research partner

Being involved as a research partner with lived experience of disability is a chance to:

• Voice your opinion on issues that are important to you
• Advocate for people with disabilities and their families
• Be a valuable part of a research team creating meaningful change for people with disability and their families
• Share your knowledge with the research team and be recognized for your input
• Receive training and gain new skills and knowledge
• Be rewarded for your time and efforts

Here is what our partners have to say about their involvement:

“Being involved in research helps me lead the trail for others and improve the lives of people like me with the things that matter.” (Ivy, young person)

 

“I have been actively involved in multiple research projects as a parent research partner and believe that parents bring a valuable and unique perspective that can only enhance research, making it more relevant and the outcomes more impactful.” (Vicki, parent)

 

How can you partner with us in our research?

Different levels of involvement will need more or less time. We are flexible, and we aim to help people be involved in ways that work for them. You can choose the level of involvement that suits you. Your involvement can be by phone, zoom or email and is a paid experience. You may choose to be a:

Community Reviewer

A community reviewer is someone who is involved in a one-off activity where they provide feedback on a document or research idea. For example, providing feedback on whether our documents are easily understood, accessible and inclusive for all

Consumer Advisor

A consumer advisor joins one of our consumer councils to provide input into one or more of our Hub research projects. They generally meet once every 2 months where they receive updates from our team and contribute their thoughts and ideas on a range of items e.g., development of our website and social media presence; Plain English and Easy to Read documentation.

Consumer Research Partner

A consumer research partner is a named investigator on one of our research projects in an area of interest to them. Research partners are invited to monthly meetings with the project team and contribute to a project from inception of the research idea to dissemination of the results at the end.

The International Association for Public Participation (IAP2) has created a Spectrum of Public Participation that outlines different levels of public participation as they can be applied to research and other community engagement settings. As you move to the right across the spectrum, there is increasing impact you have on the research and the decisions being made.

We use this as a guide to the different levels of involvement community members may take with our Healthy Trajectories team.