Consumer Involvement – Practical Guides & Resources

What you’ll find

group of young adults in consult web

There are various tools for consumer involvement that help researchers to involve community members in their research.

    • The National Health and Medical Research Council (NHMRC) provides guidance on expectations for consumer and community engagement in health research conducted in Australia;
    • The Australian Clinical Trials Alliance toolkit is presented as an interactive map with information on how researchers and research organisations can involve and engage consumers to help shape research throughout its lifecycle (with a focus on clinical trials);
    • Monash Partners provides free online training modules on consumer and community involvement in research;
    • INVOLVE in the United Kingdom was established with the aim of advancing public involvement in health and social care research. They provide many practical resources and publications designed to assist researchers with effective consumer involvement;
    • Cancer Australia provides a downloadable guide for consumer involvement in research, that also has relevant information for other areas of health research;
    • The Experience Based Co-Design Toolkit by the Australian Healthcare and Hospitals Association aims to equip those working in the health sector with the tools and approaches they need to create authentic and equal partnerships with consumers in order to co-design care and deliver an improved experience;
    • The Agency for Clinical Innovation provides information on experience-based co-design, which is a collaborative approach that brings consumers, families, carers and staff together to improve health services. Three important features of experience-based co-design are outlined: ‘Experience,’ ‘Co’ and ‘Design;’ 
    • The Canadian Strategy for Patient-Oriented Research has a practical “How-To” guide on patient engagement for researchers that can be downloaded from their website;
    • The Patient-Centred Outcomes Research Institute in the United States has useful resources on their website to guide researchers in community Involvement;
    • This Guidebook by the James Lind Alliance is a step-by-step guide to the processes involved in a Priority Setting Partnership (PSP). PSPs enable clinicians, patients and carers to work together to identify and prioritise evidence uncertainties in particular areas of healthcare that could be answered by research.