There are several effective ways to identify consumers to involve in your research. Aim to connect with individuals whose lived experience aligns with your research focus, ensuring relevance and meaningful contribution.
To support this process, prepare a brief Expression of Interest (EOI) that outlines the project, the role of consumers, and how they can learn more or apply. You can use this 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.
- AHRA Research Translation Centres may be able to assist.
- 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 the stages of research. The diagram below outlines key approaches you can consider when planning involvement.
Formal ethics approval is generally not required for consumer and community involvement activities, as consumers are not acting as research participants. However, ethical conduct remains essential.
Because consumer and community involvement is inherently relational and often explores emotional or sensitive topics, it is important to approach these activities with care. Researchers must consider core ethical principles—such as respect, transparency, and minimising harm—and remain mindful of the potential emotional impact on those involved.
Even without formal ethics review, thoughtful planning and ethical sensitivity are critical to building trust and ensuring safe, respectful engagement.
There are several established frameworks that guide ethical considerations when involving consumers and community members in research. Below, we outline two adapted frameworks along with their references.
These references provide more detailed guidance, including comprehensive 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 for consumer and community involvement is important to ensure you have the right knowledge, skills and mindset to work effectively and respectfully with consumers throughout the research process. Here are some opportunities to undertake further training programs in consumer and community involvement:
- Training and support should be available for consumers, researchers and health professionals.
- The Australian Health Research Alliance centres offer events relevant to consumer and community involvement that may be of interest to you. View their upcoming events here.
- Look to research translation centres and consumer organisations for training information.
- Look in local areas for communities of practice in CCI and /or CCI champions.
- See our list of additional online training available below.
To enable connection between those with an interest in consumer and community involvement, we have started a Health Research Hub Discussion Forum on LinkedIn. Here, you can connect with other consumers and community members, researchers and clinicians. A LinkedIn account is required to participate in these discussions.