There are several effective strategies for identifying consumers to involve in your research. Aim to engage individuals whose lived experience closely aligns with your research focus, ensuring their contributions are relevant and meaningful.
To support this process, prepare a brief Expression of Interest (EOI) that outlines the project, the role of consumers, and clear steps for learning more or applying. You can use the provided EOI template to get started.
Once you have your EOI, here are some suggestions on where to share it:
- Many state and national health consumer organisations, either for specific health conditions (e.g. the Heart Foundation, Diabetes Australia etc.) or broader representation (Consumers Health Forum of Australia, Health Consumers NSW, Health Consumers Council WA etc.), have avenues for communicating with their members about research projects. We recommend contacting these organisations to see if they are able to support connection between community members and researchers. Ultimately, establishing a long term relationship with these organisations is a key initial step for connecting with consumers and community members.
- Consider engaging with local councils and health services with established consumer and community networks.
- Monash University’s online consumer engagement platform, Research Say, is open to all researchers across Australia.
- The Western Australian Health Translation Network CCIProgram provides support to researchers within their Network.
- Consider reaching out to local or online community groups as a way to engage consumers. Before doing so, it is important to first check with the group’s administrator or moderator to understand the group’s purpose and confirm whether discussing research opportunities is appropriate.
- Share your expression of interest on our Health Research Hub Discussion Forum on LinkedIn.
There are many practical and meaningful ways to involve consumers and community members throughout each stage of the research process. The diagram below highlights key approaches to consider when planning their involvement.
Engaging with priority populations – groups disproportionately affected by poor health outcomes – is a strategic and ethical approach to reducing healthcare disparities. These populations often include individuals defined by sociodemographic factors such as race, ethnicity, gender identity, sexual orientation, socioeconomic or disability status, and geographic location and people living with health conditions such as mental illness.
Despite being among the most impacted, these groups are frequently underrepresented in research due to systemic barriers such as mistrust, limited access, and exclusionary study designs. Addressing these challenges requires intentional, inclusive strategies that foster trust, accessibility, and relevance in research design and engagement.
The Department of Health and Aged Care, National Consumer Engagement Strategy for Health and Wellbeing, provides Good Practice Guidelines. Here are the key principles:
- Build and sustain relational, not transactional partnerships.
- Develop a detailed understanding of the context.
- Identify who to engage.
- Seek and support diverse engagement participation.
- Meet people where they are.
- Understand that people require different approaches.
- Engage with humility and empathy.
- Don’t let ‘perfect’ be the enemy of good.
- Seek and act on feedback.
- Monitor engagement and evaluate impact.
Strategies to support inclusive involvement include:
- Connect with community organisations or existing consumer groups to discuss the most effective ways to engage and collaborate.
- Meet consumers and communities in their own space and take the time to build relationships and trust before talking about the research.
- Offer something of value to the community in exchange for their time and input.
- Provide interpreter services to ensure language is not a barrier to participation.
- Schedule meetings at convenient times, such as evenings or weekends, to accommodate different schedules.
- Arrange or reimburse transportation to make participation accessible.
- View relationship-building as a long-term investment. Progress may be gradual, so keep track of your efforts to engage with community groups, even if initial attempts are not successful.
For more information, please refer to our Resources section and case study on Conducting Research with Aboriginal and Torres Strait Islander communities.
Formal ethics approval is generally not required for consumer and community involvement activities, as consumers are not considered research participants. However, upholding ethical standards remains essential.
Consumer and community involvement is inherently relational and may touch on emotional or sensitive topics. Therefore, it is important to approach these activities with care. Researchers should be guided by core ethical principles – such as respect, transparency, and minimising harm – and remain mindful of the potential emotional impact on those involved.
Even in the absence of formal ethics review, thoughtful planning and ethical sensitivity are critical for building trust and ensuring safe, respectful engagement.
Several established frameworks provide guidance on ethical considerations when involving consumers and community members in projects. Below, we outline two adapted frameworks with their references. These resources offer detailed guidance and practical actions to help identify and mitigate potential risks. We encourage you to explore them further to ensure your involvement practices are ethically sound, respectful, and inclusive.
The ‘ethical anchor’ framework for consumer and community involvement.
| Issues | Examples |
| Emotional risk | Potential emotional trauma for consumers when talking about their personal experiences. See Framework for Trauma-informed Practice resource. |
| Physical risk | Potential physical risk in the environment where an activity is held. |
| Confidentiality and personal data | Potential for misuse of consumer and communities’ images, words or personal information. |
| Support versus paternalism | Potential to disempower consumers and communities and reinforce power imbalances if autonomy and agency are overlooked. |
| Marginalisation | Potential to perpetuate harm and reinforce oppression if involvement in tokenistic. |
| Building and maintaining healthy relationships | Poor communication or not respecting professional boundaries with consumers and communities. |
Authors Pandya-Wood and colleagues have developed a framework to support ethical collaboration between researchers and consumers during the early design phase of a research project. This framework emphasises respectful, inclusive, and transparent engagement.
Key elements from the publication have been adapted and summarised in the table below. For more detailed guidance – including extensive suggested actions to mitigate risk – please refer to the original source.
An “ethically conscious framework” for consumer and community involvement.
| Potential Areas for Ethical Issues | Examples or Explainers |
| Allocating sufficient time for consumer and community involvement | Developing relationships and involving consumers in all stages of research takes time. Without sufficient time there is a risk of tokenistic involvement. |
| Avoiding tokenism | Lack of genuine or meaningful consumer involvement. |
| Communicating clearly from the outset | Inconsistent or unclear communication with consumers and community members about their roles in a project can cause them to become disengaged. |
| Allowing consumers to stop their involvement for any unstated reasons | Some consumers may be overwhelmed by their involvement or face health or other personal issues, leaving them unable to continue with their role. |
| Ensuring fairness of opportunity | Not ensuring inclusive opportunities are provided and not seeking diversity in consumers or the best person for the role (i.e. choosing the most convenient consumer/s). |
| Differentiating qualitative research methods and consumer and community involvement activities | Using qualitative research methods language (e.g. focus groups) in consumer and community involvement activities. Calling people with lived experience consumers, when they are research participants. This can create ambiguity about when ethics approvals are required. |
| Working sensitively | Asking individuals to share their lived experiences can sometimes involve emotionally challenging or distressing topics. It’s important to approach these conversations with care, empathy, and appropriate support. |
| Being conscious of confidentiality | Disclosure of sensitive, personal information. Recording consumers or community without informed consent. Failing to inform or instruct about confidentiality and research design/ideas. |
| Valuing, acknowledging and rewarding public involvement | Not valuing, acknowledging, reimbursing or recognising the contributions made by consumers or communities. |
Reciprocity is a foundational principle in consumer and community involvement, ensuring that all individuals feel valued and their contributions are acknowledged. Providing payment and reimbursement not only removes barriers to participation but also promotes equity and respect across the team.
Recognising consumers through fair compensation for their time, expertise, and lived experience is considered best practice, as outlined in the NHMRC and CHF Statement on Consumer and Community Involvement in Health and Medical Research.
All projects should include a dedicated budget to:
- Pay consumers or community representatives for their involvement.
- Reimburse any out-of-pocket costs (e.g. travel, childcare, internet access).
- Cover training, support, and resources that enhance accessibility and enable genuine, equitable participation.
By embedding reciprocity into planning and budgeting, research teams can foster inclusive and respectful partnerships.
What do payment, reimbursement and recognition mean?
- Payment: a financial amount provided to consumers or community members in return for their time, expertise and contributions to health and medical research. This acknowledges their role as collaborators, not volunteers.
- Reimbursement: compensation for reasonable out-of-pocket expenses incurred as a result of, or to enable, participation in research activities. This may include costs such as travel, childcare, internet access, or other necessary expenses.
- Recognition: acknowledgement of a consumer’s contribution through non-financial means, such as a letter of thanks, certificate of appreciation, inclusion in published works, or a professional reference. It is considered best practice to ask individuals how they prefer to be recognised.
Key considerations:
- Discuss Compensation Early: Have early conversations with consumers about how they would like to be compensated. Payment may affect their taxable income, pension, or government benefits, so it’s important to provide clear information and options.
- Simplify the Claims Process: Ensure the reimbursement process is simple, transparent, and timely from the consumer’s perspective. Work closely with your finance department to explore flexible payment options and establish a streamlined process.
Training in consumer and community involvement is essential for developing the knowledge, skills, and mindset needed to work effectively and respectfully with consumers throughout the research process. The ‘Resources – Training’ tab includes current online and in-person training offerings.
Join the Conversation on Consumer and Community Involvement in Health Research
To foster meaningful connections among those passionate about consumer and community involvement, we’ve launched the Health Research Hub Discussion Forum on LinkedIn. This space is designed for consumers, community members, researchers, and clinicians to share ideas, ask questions, and collaborate.
To participate, you’ll need a LinkedIn account. We look forward to seeing you there!