Your story and experiences can shape the quality and direction of health and medical research and efforts to improve healthcare. When working alongside researchers and healthcare professionals, your knowledge and experience of a health condition and interactions with the health system can help ensure the research project is relevant to the needs of consumers and the community. Your unique perspectives offer many benefits.
Take the opportunity to partner with researchers and healthcare professionals to design and deliver research that improves the health of the Australian community.
Benefits for consumers can include:
Consumers and community members can gain a range of benefits from involvement in health and medical research. Involvement can foster the development of personal skills, knowledge about research or a health condition and connections with new people. Many consumers feel valued as they use their experience of a health condition to influence decisions about health research, healthcare systems and policy. For others, consumer and community involvement fulfills a sense of being a voice for others, giving back to the people and services that have helped them, or advocating for changes based on an experience they do not want to see repeated.
Ultimately, by ensuring that research is more relevant to community needs, consumer and community involvement helps to design better and more inclusive health systems to bring benefits to all.
Hear why consumer advocate, Ms Ainslie Cahill AM, enjoys working with researchers.
There are many guidelines and statements which emphasise different, but similar, values and principles which underpin consumer and community involvement. Here we highlight the advice of the Medical Research Future Fund Consumer Reference Panel (2023):
The panel recommends that consumers should be involved:
- At all stages of research, from defining the need/priority of a research question, refining the research question and research design through to conduct of the research and sharing and translation of results.
- In partnership with researchers, with consumers respected and recognised for the valuable and complementary knowledge, expertise and perspectives they bring to the research.
- Effectively, with sufficient time, resources and depth of relationships to enable consumers to understand and actively engage with and contribute to the research.
- Sensitively and safely, through research teams with strong and broad capacity and capabilities in consumer involvement, appropriate training and a supportive environment for consumers, and clearly defined and agreed roles.
- With broad diversity and equity, with the goal of increasing involvement of priority populations through culturally safe and appropriate engagement.
Consumers and community members involved in health research have several ethical responsibilities to ensure integrity of the research process. These responsibilities include:
- Fully understanding the research/project and the consumer role: This is vital for making an informed decision prior to committing to the role and ensuring the role is appropriate for the research/ project (i.e. being asked to donate funds is not appropriate, and ensuring the role is feasible for consumers).
- Maintaining confidentiality: For example, private information (i.e. health or genetic information, test results) or the intellectual property of a research idea.
- Showing respect for the perspectives and contributions of others and working together to create respectful relationships and environments.
- Acting with honesty and integrity: Be honest if there are health or other factors that may limit your ability to be involved and declare any conflicts of interest.
- Actively engaging: For example, attending meetings, providing feedback, contributing to discussions and decision making, and engaging with broader networks and communities.
- Declaring any particular interests and objectives and committing to pursuing the agreed and shared goals of the research/project. Consumers sometimes have multiple perspectives based on their experiences e.g., consumer, consumer/healthcare professional, consumer/researcher, consumer representative and it is important to clearly communicate these viewpoints.