Consumer Participation

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.

  1. Hopkins H. Consumer participation in research. Health Voices. 2008 Apr;Issue 1. (1.22MB pdf)
  2. Giles LC, Cameron ID, Crotty M. Disability in older Australians: projections for 2006-2031. Med J Aust. 2003 Aug 4;179(3):130-3.
  3. Wilkinson EK, Salisbury C, Bosanquet N, Franks PJ, Kite S, Lorentzon M, Naysmith A. Patient and carer preference for, and satisfaction with, specialist models of palliative care: a systematic literature review. Palliat Med. 1999 May;13(3):197-216.
  4. Hubbard G, Kidd L, Donaghy E, McDonald C, Kearney N. A review of literature about involving people affected by cancer in research, policy and planning and practice. Patient Educ Couns. 2007 Jan;65(1):21-33. Epub 2006 Jul 24.
  5. Rosenwax LK, McNamara BA. Who receives specialist palliative care in Western Australia--and who misses out. Palliat Med. 2006 Jun;20(4):439-45.
Last updated 18 January 2017