Engaging Consumers

CHS have developed a suite of resources to support consumer, carer and community partnerships in health research.

The resources were designed in collaboration with consumers, carers, researchers, and staff.

• Learn more about consumers and researchers partnering in research and what is involved
• Access separate toolkits designed for researchers and consumers, as well as quick start/quick read versions for easy reference.

Funded by the National Health and Medical Research Council (NHMRC), the Centre – known as WH&Y (Wellbeing Health & Youth) – champions good health in the teenage years, and working with clinicians, young people and families to transform how teenage healthcare is researched and designed.

HealthHive offers a free online course, called Foundations in Public Health Research & Advocacy for Young People, created with young people for young people to learn more about how to contribute to public health research and advocacy.

This interactive course includes 6 core modules that cover topics like what is research, why young people should be involved, and how young people can get involved.  The HealthHive initiative is led by the Youth Well Lab at the University of Sydney in collaboration with several partner organisations including Sydney Health Partners.

Associate Professor Christina Abdel Shaheed, Co-Chair Sydney Health Partners Musculoskeletal Clinical Academic Group and Ann-Mason Furmage, Consumer Partner and Associate Professor Stephanie Partridge, Director of the Youth Well Lab at the University of Sydney and Kay Connor, Peer Facilitator discuss two case studies that illustrate productive consumer-researcher partnerships.

Explore the new NHMRC Statement on Consumer and Community Involvement in Health and Medical Research via this webinar presented in May 2026. Discover the key updates and how to effectively embed meaningful consumer and community involvement across the research lifecycle.

This hybrid event, hosted by the Department of Nursing, University of Melbourne on 14 July 2026, brought together people with lived experience across paediatrics, cancer and mental health to discuss examples of involvement in point-of-care and system-level initiatives aimed at improving experiences of care and care delivery.

The event was chaired by Dr Lauren Zarb who was joined by consumer panellists Shu-Yi Soong, Hamilton Kennedy and Heather Renton.

Financial acknowledgement for consumer representation is accepted as best practice and many health consumer organisations across Australia recommend remuneration for any meaningful contribution. The standard practice is to cover all out-of-pocket expenses. Sitting fees for committee membership or hourly rate remuneration can be offered dependent on level of contribution.

The VCCC Alliance has developed a cost model that aligns with the Victorian Department of Premier and Cabinet’s Appointment and Remuneration Guidelines (referenced by Safer Care Victoria), using the upper limit on Schedule C: Classification criteria and remuneration schedule – Group C organisations (Section 3a) for advisory bodies to departments.

The VCCC Alliance cost model contains a defined payment schedule correlating with specific levels of engagement to maintain consistency across projects and programs. The model can be used for budgeting purposes and provides an overview of consumer activity across five levels of consumer participation outlined in the Model of Consumer Engagement.

A Checklist for Researchers who are partnering with people with lived/living experience.

This checklist is designed to help researchers without lived experience be mindful of the considerations when engaging people with lived and living experience in participatory research and/or co-design processes.

Safe Research Partnership with People with Lived and Living Experience (LE) – a Reflective Guide for people WITH LE Partnering in Research.

This guide will help people with lived and living experience feel ready and supported when engaging in co-design or participatory research. It aims to build confidence and provide clarity on roles, expectations, and ways to protect emotional safety.

Lived experience involvement in all forms of research and evaluation is becoming the norm. Major funders like the NHMRC and MRFF have funding streams that require lived experience involvement in applications, and some journals now require authors to justify the exclusion of lived experience experts within study design and analysis.

In this presentation, lived experience researchers Dr. Tessa Zirnsak and Ailsa Rayner will give an overview of different models of lived experience involvement that can be adapted and discuss the values and practicalities associated with this emerging norm in research and evaluation.

Incorporating CCI into research can provide improved and directed research priorities, community confidence in research and an increased level of research transparency. The Webinar will provide:

• Understanding of the value and contribution that consumer and community involvement (CCI) can have in research
• How and where consumers and community members can contribute to research
• How to recruit consumers to your team
• Methods of involvement
• Tools to support involvement activities.

There are different reasons why people engage in research. The information in this resource focuses on people who join or are thinking about joining research studies as research participants. A lot of research cannot be done without the help of people willing to join studies. Often people want to know more about taking part in research, but do not know what kind of questions to ask. Here you will find answers to some frequently asked questions about participating in research.

Share with your consumer groups, and  prepare your answers to these questions before approaching potential participants for your research.

This webinar held 16 November 2021 provides researchers with the skills and tools needed to effectively involve consumers in research. You will hear from MACH researchers and consumers.

Topics covered include:

• Why consumer engagement is important
• What consumer engagement means
• When consumer engagement should occur
• How researchers can most effectively engage with consumers
• Where to go for more information

A panel discussion concludes the session.

This webinar held on 27 July 2022 discusses the skills and tools needed to effectively involve members of culturally and linguistically diverse (CALD) communities in their research. This session is targeted at and developed with early and mid-career researchers and covers topics including:

• What to consider when planning and undertaking your research
• Building trust
• Consent processes
• Ensuring cultural appropriateness
• Communicating with the community

The presentations are followed by a panel discussion.

Hosted by Uncle Graham Atkinson, co-chair of the MACH Aboriginal Leadership Group and MACH Board Indigenous Elder Representative on 17 November 2022, this satellite event of the NHMRC Research Translation Long Weekend 2022 Symposium included speakers and panelists, the Victorian Government and researchers from across the MACH partnership.

Four consumer panellists: Christine Hofmeyer, Adrienne Copley, Tristan Jallais and Catherine Dooley, discuss their experiences as consumer representatives in palliative care. This discussion delves into the significance of consumer involvement in research and service delivery and explore best practices for effective engagement.

The Statement on consumer and community involvement in health and medical research (The Statement), co-authored by the National Health and Medical Research Council (NHMRC) and the Consumers Health Forum of Australia (CHF), aims to guide research institutions, researchers, consumers and community members in the active involvement of consumers and community members in all aspects of health and medical research.

This seminar provides an overview of important considerations for engaging Indigenous people in research, including understanding cultural differences, ethical considerations, and the importance of community consultation.

Every researcher should be actively involving consumer or community members to improve quality and increase impact of their research. Community involvement is increasingly a requirement for funding agencies. This seminar provides a practical introduction and will cover basic principles of consumer and community involvement, the benefits and barriers, and what to put in place to get started.

This course offers an introduction to Consumer and Community Involvement (CCI ) in health and medical research. It is designed for consumers, community members, researchers, administrators, policy makers and organisations involved in health research.

Click on ‘Learn more’, then on the RET Program website, click on ‘log in’, sign up as a new member with your details. When you come to ‘Institution’ in the drop-down box, click on ‘@research’, you will then be asked to click on your health service in the drop-down box. In the next box where it asks for the @Research Access Code, enter ‘atResearch’. Registering this way will provide free access to the RET Program courses, courtesy of @research.

The Consumer Engagement webinar series covers a range of content including:
• Consumer Engagement Basics
• Case study examples of exemplar project conducted with consumers
• The value of consumer engagement: exploring different frameworks to evaluate our engagement
• Tips and tricks to ensure genuine and meaningful engagement in grant applications. Additional reading on existing models and frameworks; Systematic review on frameworks for evaluating and reporting public involvement in reserch; AHRA CCI evaluation paper that explores exiting tools to measure the impact of CCI in research; National information and tools

In 2020, NHMRC released a suite of resources related to consumer and community involvement in, and expectations of, health and medical research. The toolkit was developed in consultation with members of the Community and Consumer Advisory Group from the 2015 to 2018 and 2018 to 2021 triennia. The Toolkit complements the Statement on Consumer and Community Involvement in Health and Medical Research, by providing further detailed information and tools on five individual areas of interest: Expectations and Value – Framework for Effective Consumer and Community Engagement in Research; Measuring Alignment with Consumer and Community Expectations in Research; Measuring Effectiveness of Consumer and Community Involvement in Research; Considering Impact of Reserach from a Consumer and Comunity Perspective; Self-Assessment of Consumer and Community Involvement in Research. 10 additional links are provided to other resources developed by major agencies e.g. Cancer Australia.

Consumer and Community Involvement is a series of six self-paced online modules, providing general and practical information and strategies to meaningfully conduct and embed consumer and community involvement in research and healthcare improvement projects.

A detailed guide for researchers stepping through the how-to of involving patients in health research.

This guidance summarises what an under-served group is, a roadmap suggesting intervention points to improve inclusion, examples of under-served groups and barriers to inclusion. It then provides a suggested framework of questions to guide the deliberations of funders, researchers and delivery teams as they design and assess health and care research proposals, and ends with examples of good practice and other resources to guide teams seeking to engage with, and improve inclusion of, under-served groups in health and care research.

WAHTN has developed a CCI Handbook as part of an Australian Health Research Alliance national initiative funded by the Medical Research Future Fund, with additional support from their partners. It complements the rich suite of consumer involvement research, frameworks, policies and toolkits that have been developed by governments and organisations Australia-wide and internationally, and addresses a key barrier to embedding CCI: how to start. The Handbook contains the five phases for successful embedding of Consumer involvement: 1. Committment 2. Planning and Preparation 3. Managing for Success 4. Evaluating the involvement 5. Concluding the Involvement as well as clear steps for each phase for each stakeholder (organisation/researcher/consumer/funder) and practical tools/resources to support each step.

The Consumer Involvement and Engagement Toolkit (the Toolkit) provides practical advice for researchers and research organisations wishing to conduct patient-centred clinical trials. Through the use of an interactive map, the Toolkit provides guidance and tools to help plan, deliver, evaluate and report consumer and community involvement and engagement activities. The Toolkit’s focus is clinical trials, however, much of the content is relevant to other types of health research.

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

Understanding and using the language/terminology associated with lesbian, gay, bisexual, transgender, intersex, queer, asexual and other sexually or gender diverse (LGBTIQA+)1 people helps to ensure that services and organisations are inclusive and respectful.2 This resource sheet provides a glossary of terms for practitioners and service providers to help them to better understand the terminology and to use inclusive language in service provision.

Drawing on a rapid review of the evidence, this guide outlines why inclusive communication matters and what works to ensure inclusive communication, and supports practitioners to use this evidence in their decision making when working.