Consumer and community involvement in research

At RECOVER Injury Research Centre, we believe research is stronger when it is shaped by the people it is intended to benefit.

Throughout the research process we partner with people who have lived experience of injury, their family members and carers, and community representatives. Together, we help ensure research addresses real-world priorities, improves health outcomes and leads to meaningful change.

Whether you're interested in sharing your experiences in a community consultation, joining a project team, or learning more about consumer involvement, we'd love to hear from you.

Consumer involvement means working with people who have lived experience as partners in research, not just as research participants.

Consumers contribute their knowledge, perspectives and experiences throughout the research process. They may help identify research priorities, contribute to study design, co-design resources, advise on implementation or help communicate research findings.

Definition of consumer involvement

Consumer involvement can mean different things to different groups. At RECOVER, we have adopted the definition of consumer and community involvement outlined by McKenzie and Hanley (2011)2, where consumers work in partnerships with researchers to shape decisions about research priorities, policy, and practice.

Why consumer involvement matters

  • Research focuses on issues that matter to patients and communities.
  • Research is more accessible and relevant.
  • Study materials are easier to understand.
  • Findings are more likely to improve healthcare and recovery.

What's the difference between consumer involvement in research and being a research participant

Both are essential. Consumer advisors help ensure research is relevant and meaningful, while research participants make research possible. Many people choose to contribute in both ways at different times.

Consumer involvementResearch participation
You help shape research as an advisor or partner.You take part in a research study.
You contribute your lived experience to improve research.You contribute data that helps answer research questions.
You may help plan, review or co-design research.You may complete surveys, interviews, assessments or interventions.

 

RECOVER has adopted the Health Translation Queensland Consumer and Community Involvement Framework, which guides our approach to meaningful partnerships with consumers.

Our researchers and Consumer Advisory Group members contributed to the development of the framework, building on RECOVER's long history of consumer partnership.

RECOVER's Consumer Advisory Group (CAG) brings together people with lived experience of injury who work alongside our researchers to improve the relevance, quality and impact of our research.

The RECOVER CAG contributes to:

  • setting research priorities
  • reviewing grant applications
  • advising on study design
  • improving participant information
  • co-designing resources
  • sharing lived experience
  • supporting knowledge translation

Membership of the Consumer Advisory Group is by invitation or expression of interest when opportunities arise. If you'd like to learn more about consumer involvement at RECOVER, please contact us.

Additional resources and training for researchers and consumers

The following resources are designed to inform consumers and assist researchers in conducting and embedding consumer engagement in their research:  

Telethon Kids Institute

For Consumers: An introduction to consumer and community involvement in health research https://training.telethonkids.org.au/courses/consumer-introduction/

Monash Partners Academic Health Science Centre.

For researchers: Consumer and community involvement training modules https://monashpartners.org.au/education-and-training/cci/

Health Consumers Queensland

Recruiting consumers: http://www.hcq.org.au/home/recruiting-consumers/

A guide for consumers partnering with health organisations: http://www.hcq.org.au/wp-content/uploads/2018/06/HCQ_ConsumerGuide.pdf

A Guide for Health Staff: Partnering with Consumers 2018. Brisbane: Health Consumers Queensland. http://www.hcq.org.au/wp-content/uploads/2018/06/HCQ_StaffGuide.pdf

Consumer and community engagement framework for health organisations and consumers 2017. Health Consumers Queensland. http://www.hcq.org.au/wp-content/uploads/2017/03/HCQ-CCE-Framework-2017.pdf 

The Australian Clinical Trials Alliance

Consumer Involvement & Engagement Toolkit. The Consumer Involvement and Engagement Toolkit (the Toolkit) provides practical advice for researchers and research organisations wishing to conduct patient-centred clinical trials.

Published research involving consumers

Jenkinson B, Maxwell J, Bell A, Young, A., Smith, A.C., Christoffersen, A., Trevor, D., Young, L., Russell, T.  Bringing researchers to the consumer table: The process and outcomes of a consumer roundtable on telehealthJournal of Telemedicine and Telecare. 2023;0(0). doi:10.1177/1357633X231188536

Cox R, Kendall M, Molineux M, Miller E, Tanner B. Consumer engagement in occupational therapy health‐related research: A scoping review of the Australian Occupational Therapy Journal and a call to action. Australian Occupational Therapy Journal. 2020.