The Australian community is an integral part of the research process. Not only are consumers the ultimate recipients of research findings, but they are potential advocates for change and need. The significant role that consumers can play has been recognised in the National Health and Medical Research Council’s (NHMRC) document A Model Framework for Consumer and Community Participation in Health and Medical Research (508kb pdf). The framework provides guidance on how to support consumer involvement in the research cycle, from determining what to research through to how to communicate and apply research.
Consumers are already active participants in generating evidence. As taxpayers, they fund research projects and research organisations. They are involved as participants in clinical trials and in population health surveys. Increasingly they are taking on roles as consumer health representatives in projects and organisations to advocate for consumer and client needs and perspectives. [1]
Palliative care is an area of consumer significance. As the population ages and the disease base changes, the demand for and provision of healthcare is affected. [2] Understanding the specific needs of those needing palliative care is particularly important as the goals of care are not curative. Consumer input, particularly input from patients and carers, is vital in defining and measuring outcomes in this field. [3,4]
Within palliative care there are also areas of specific needs that relate to population groups within Australia. [5] Such groups include residents in aged care facilities, Aboriginal and Torres Strait Islander peoples, those from culturally and linguistically diverse backgrounds and children and young people with life-limiting illnesses. Participation from a group of consumers can help to ensure that their specific needs are met.