Information that comes closest to the facts  

There are differing views on what is meant by the term ‘evidence’ and its value, types and sources in the context of evidence-based health care. [1,2] The Canadian Health Services Research Foundation (2005) developed the following definition that reflects many considerations around evidence.

Evidence is information that comes closest to the facts of a matter. The form it takes depends on the context. The findings of high-quality, methodologically appropriate research are the most accurate evidence. Because research is often incomplete and sometimes contradictory or unavailable, other kinds of information are necessary supplements to or stand-ins for research. The evidence base for a decision is the multiple forms of evidence combined to balance rigour with expedience – while privileging the former over the latter. [3]

Research

Where there is uncertainty or disagreement about practice or when new therapies are proposed, research is a way of providing evidence as to the most effective choice. Some research is carried out within the existing resources of academic, clinical or community organisations. Research may also be externally funded through grant schemes and tenders or through sponsorships, donations or commercial arrangements. The Australian Government provides significant research funds through its formal agencies, the National Health and Medical Research Council (NHMRC) and the Australian Research Council (ARC).

Research plays a significant role in healthcare. It is regulated by various ethics and governance frameworks. [4-6]

Palliative care as a discipline and area of clinical practice has been developing its evidence base and the capacity to carry out clinical research. [7,8] Within Australia, there has been a substantial investment in both research and project investigation within the National Palliative Care Program. This program included a series of research grant rounds managed by the NHMRC. The National Palliative Care Program is assisting in building a body of evidence to assist decision making and to guide implementation in palliative care.


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. [9]

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. [10] 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. [11,12]

Within palliative care there are also areas of specific needs that relate to population groups within Australia. [13] 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. Lomas J, Culyer T, McCutcheon C, McAuley L, Law S. Conceptualizing and combining evidence for health system guidance (492kb pdf). Ottawa: Canadian Health Services Research Foundation; 2005 May.
  2. Aoun SM, Kristjanson LJ. Challenging the framework for evidence in palliative care. Palliat Med. 2005 Sep;19(6):461-5.
  3. Canadian Health Services Research Foundation. Annual report 2005. Ottawa: Canadian Health Services Research Foundation; 2005. p. 9.
  4. National Health & Medical Research Council (NHMRC). Australian Code for the Responsible Conduct of Research. Canberra: NHMRC; 2018.
  5. National Health and Medical Research Council (NHMRC). National Statement on Ethical Conduct in Human Research 2007 - (Updated 2018). Canberra: NHMRC; 2018.
  6. Poustie SJ, Taylor DM, Forbes AB, Skiba MA, Nelson MR, McNeil JJ. Implementing a research governance framework for clinical and public health research. Med J Aust. 2006 Dec 4-18;185(11-12):623-6.
  7. Kaasa S, Hjermstad MJ, Loge JH. Methodological and structural challenges in palliative care research: how have we fared in the last decades? Palliat Med. 2006 Dec;20(8):727-34.
  8. Tieman J, Sladek R, Currow D. Changes in the quantity and level of evidence of palliative and hospice care literature: the last century. J Clin Oncol. 2008 Dec 10;26(35):5679-83. Epub 2008 Nov 10.
  9. Hopkins H. Consumer participation in research. Health Voices. 2008 Apr;Issue 1. (1.22MB pdf)
  10. Giles LC, Cameron ID, Crotty M. Disability in older Australians: projections for 2006-2031. Med J Aust. 2003 Aug 4;179(3):130-3.
  11. 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.
  12. 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.
  13. 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 03 September 2021

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