Consumer & Community Involvement in Research

What is Consumer & Community Involvement in Research?

  • Consumer involvement in research requires an active partnership
  • Consumer involvement in research does not include clinical trial participation
  • Different levels of consumers in research can be thought of as 3 pieces of PIE -participation, involvement and engagement which are complimentary but different ways to work with consumers

Consumers are defined as patients and potential patients, carers and people who use health care services. Consumers can also be people who represent the views and interests of a consumer organisation, a community or a wider constituency.’

Consumer and Community Involvement is where consumers and the community actively work with researchers or research organisations to help shape decisions about health research priorities, policy and practice’

‘The active partnership is important to ensure decision making is ‘with’ or ‘by’ consumers rather than to,‘about’ or ‘for’ consumers.’  ‘Consumer Involvement’ is not the same as taking part in research.

Consumer Representatives– voice perspectives on behalf of consumers (organisation or a community)’.

Consumer Engagement– is where information and knowledge about research is shared with consumers and the community so they are better informed on why, how, where and by whom research is conducted’.

Researcher Training

Health Consumers NSW

(training for health researchers and for research consumers). Training does not have a disease specific focus.


Telethon Kids Institute

Website:  www.


Health Issues Centre (Vic)

Website: www.

Union for Cancer Control (UCC)

Patient Advocate Course Website:


Cancer Council NSW (CCNSW)

offer a free online ‘Consumer Involvement in Research’ course that can be accessed from the Cancer Council Australia website. It has a “Cancer” Focus.
Website : elearning/consumers-in-researchtraining

Health Consumers NSW

(training for health researchers and for research consumers). Training does not have a disease specific focus.


Telethon Kids Institute

Website:  www.

Consumer Matching

Cancer Voices NSW

Website is:

Consumer and Community Involvement Program (WA)


Access CR

Janelle Bowden moderates a Facebook group where researchers can post opportunities for consumers. 


Consumer Buddy Programs

Cancer Voices NSW

is setting up a buddy system for new consumers with an experienced consumer to support them as they set off on their journey.


WEHI Consumer Buddy Program

WEHI  Consumers & Research 


Toolkits and Other Resources

Australian Clinical Trials Alliance-  Involvement tool kit 

The Clinical Trials Alliance Toolkit contains a small but growing collection of dedicated resources for consumers and the community, that provide insights into what it means to become ‘involved’ in research and to increase awareness around the role and value of clinical trials.

As a platform for the sharing of information and tools, the Toolkit aims to improve public awareness and understanding of clinical trials so that consumers and the community are better equipped to influence the clinical trial agenda.

Developed by Australian Clinical Trial Alliance & CT:IQ,  the Toolkit page also contains patient participation and informational videos such as  ” What are clinical trials”. 

Telethon Kids Institute

Planning for Consumer and Community Participation in health and medical research

Link to PDF:

Australian Health Research Alliance - AHRA

Australian Health Research Alliance – AHRA

AHRA’s Consumer and Community Involvement (CCI) Initiative is a program of work which aims to embed the involvement of consumers and the community in health and medical research policy and practice.

This page has some key resources developed as part of this program 


They include: 

Consumer and Community Involvement Handbook and Quick Guide

The Handbook is a practical step-by-step guide to CCI for organisations, researchers, consumers and funders.

Tool for Assessing Consumer and Comunity Involvement in Health Research 

This report summarises an assessment of available tools to measure the impact of consumer and community involvement in health research.

The National Mental Health Commission

The National Mental Health Commission published ‘The Mental Health Safety and Quality Engagement Guide’ which focuses on participation by consumers and carers at a governance level. This is where people with a lived experience can have influence on strategic decision-making and in promoting systemic changes in all aspects of mental health services.


The NHMRC toolkit for researchers.

Federation of Ethnic Communities Council Australia (FECCA)

Promoting diverse consumer involvement



South Australia Health Medical Research Institute (SAHMRI)

South Australia Health Medical Research Institute (SAHMRI)- has a consumer involvement platform:


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