There are several ways to find consumers to be involved in your research. Aim to reach consumers and community members with experience that is relevant to your research focus. Prepare a brief expression of interest to invite consumers to learn about the project, their role and how to seek more information and apply.
When engaging with a peak body, local council or health service, take the time to understand the organisation and develop a relationship with the staff responding to your request.
Here are some suggestions:
- The Consumers Health Forum of Australia can facilitate a range of ways for consumers to be engaged here.
- Many peak bodies for specific health conditions (e.g. the Heart Foundation, Diabetes Australia etc) have avenues for communicating with their members about research projects.
- 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 engaging with local councils and health services with established consumer and community networks.
- Contact the AHRA Research Translation Centre that your institution is associated with.
- Consider engaging with local or online community groups. Firstly, however, check in with the group’s administrator or moderator about the focus of the group and whether engaging about research is appropriate.
- Share your expression of interest on our Health Research Hub Discussion Forum on LinkedIn.
There are many tangible ways to involve consumers and community members in research stages. These are described in the diagram below:
While formal ethics approval is generally 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.
There are several frameworks around ethical considerations when undertaking consumer and community involvement. We outline two adapted frameworks below and their references. The references 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. |
| 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 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. |
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. |
| 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.
- Recognition: acknowledgement of a consumer’s contribution through a letter of thanks, certificate of recognition, acknowledgement in published works, or providing a reference. It is good practice to ask people about their preference for recognition.
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.
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 connect with others who are interested in consumer and community involvement, we have started a Health Research Hub Discussion Forum on LinkedIn. Here, you can connect with other consumer and community members, researchers and healthcare professionals who are involved in research of healthcare improvement projects. You will need to create a LinkedIn account to participate in discussions here.