There are several ways to find consumers to be involved in your research. Aim to reach consumers and community members who will be reflective of your target population, including priority populations. Consider any additional support or resources you may need to include to allow consumers and community members to maximise their involvement. For many of these networks, it would be wise to establish an ongoing relationship especially if they are able to provide contacts or access to networks for you. Here are some ideas to consider:
- Contact the peak consumer organisations such as Consumers Health Forum of Australia or those specific to the health condition you are targeting. Most of these organisations have avenues of reaching their network or a platform to advertise your project.
- Tap into the AHRA Research Translation Centre network that your institution is likely to be associated with.
- Consider engaging with local councils and health services with established consumer and community networks.
- Make use of established online community groups to engage specific target populations.
- Prepare an expression of interest (EOI) for consumers to learn about the project, their role and how to apply.
- Submit your expression of interest for us to share in our newsletter.
- Share your expression of interest on our Health Research Hub Discussion Forum on LinkedIn.
- How to involve consumer and community through the research stages
- Plan what approaches to use to involve consumers and community and level of engagement throughout all stages of the research process.
- What involvement might look like at different stages of the research process (NHMRC steps in research journey combine with NHMRC research cycle)
- 1. Deciding what to research
- Build relationships
- Developing the research e.g. early involvement -in setting priorities, problem ideation
- 2. Deciding how to do it
- Developing the project e.g., grant writing
- 3. Doing it
- Collecting data
- Analysis
- 4. Letting people know the results
- Report writing
- Translating
- Advocacy
- 5. Knowing what to research next
- Evaluating- learning from experience
- 1. Deciding what to research
- Include discovery and fundamental science examples – e.g. for early discovery and fundamental scientist with acknowledgement that early discovery and fundamental science far away from human translation and trials should involve consumers at the organisational level rather than individual level
- Resources for Ways of Working with Consumers in Research
For some examples and additional details of different approaches to consumers and community involvement in research, please see our resources here. You can also see some real world success stories of working with consumers here.
While most often ethics approval is not needed for consumer and community involvement activities (as consumers are not research participants), ethical conduct and considerations are essential. Given consumer and community involvement is relational in its nature, many ethical, sensitive and emotional issues must be taken into account and consideration must be given to ethical principles and potential for harm to the people involved.
While several frameworks for ethical considerations exist when undertaking consumer and community involvement. We outline two adapted frameworks below and their references. The reference can be followed up for more detailed information including extensive suggested actions to mitigate risk.
The ‘ethical anchor’ framework for consumer and community involvement.
| Issues | Examples |
| Emotional risk | Potential emotional trauma for consumers when talking about their lived experiences. See Framework for Trauma-informed Practice resource. |
| Confidentiality and personal data | Potential for misuse of consumer and communities’ images, words or personal information such as not gaining informed consent. |
| Support versus paternalism | Potential to disempower consumers and communities and reinforce power imbalances. |
| Marginalisation | Potential to perpetuate harm and reinforce oppression such as making assumptions. |
| Building and maintaining healthy relationships | Poor communication or not respecting professional boundaries with consumers and communities. |
| Physical risk | Potential physical risk in the environment where an activity is held. |
Authors Pandya-Wood and colleagues have developed a framework to help researchers and consumers work together in ways that are ethical during the early design stage of a project. The following key points have been adapted from this publication in the table below.
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 take time. Without sufficient time there is a risk of tokenistic involvement. |
| Avoiding tokenism | No genuine or meaningful consumer involvement. For example, engaging with consumers at an overarching lab-based level to inform research direction rather than trying to work directly with consumers in fundamental research without a clear human health translation or outcome yet. |
| Communicating clearly from the outset | Inconsistent or unclear communication with consumer and community about their roles in a project can cause them to become disengaged. For example, not disclosing or misleading how far away fundamental discovery or basic science research is from human health translation. |
| 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 (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 some people about their lived experience can be a sensitive and upsetting topic. Asking or advertising for consumers to perform inappropriate roles such as donating money to the research project or research organisation. |
| 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. |
Valuing the contribution of consumers to health research through payment, reimbursement and recognition is considered best practice and reflects 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 for their expertise and time and reimburse any costs associated with the involvement. Other things to consider when developing a budget for consumer and community involvement include costs for training and support, resources to support accessibility required to ensure genuine and equitable involvement.
What does remuneration and reimbursement mean:
- Payment: an amount of money paid to consumers for the work they have undertaken as part of their involvement in health and medical research.
- Reimbursement: repayment or compensation for any reasonable money spent as a result of or to enable consumer’s involvement in research.
- Payment and reimbursement can remove barriers that prevent individuals from being involved and promote a sense of equity across the team.
Key considerations:
- Have early conversations with consumers about how they would like to be compensated, as it can impact their taxable income, pension or benefits.
- Ensure you understand the claims process. From a consumer perspective, the process should be simple, clear and timely. Liaise with the finance department to help explore different payment options and put a streamlined process in place. Approach the community organisation or existing consumer groups to discuss the best approach to engage and work with them.
For additional resources, please see our list under Payment, Reimbursement & Recognition.
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- Training and support should be available for consumers, researchers and health professionals
- Hub info on training available or people to contact
- 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