Research transforming information and our observations into evidence

Evidence, together with a persons’ needs and preferences, as well as clinician expertise informs best practice palliative care. Research underpins evidence but since not all research is equal understanding this relationship helps you to recognise evidence.

What is research?

The National Health and Medical Research Council (NHMRC) is a major funder of research in Australia and offers the following on research: The concept of research is broad and includes the creation of new knowledge and/or the use of existing knowledge in a new and creative way to generate new concepts, methodologies, inventions, and understandings. This could include synthesis and analysis of previous research to the extent that it is new and creative. [1]

The relationship to evidence

Research begins with an answerable question. Based on information/data/observations, researchers formulate an argument, a hypothesis, or an opinion that can be tested (the assertion). A research study is then designed to analyse the validity of the assertion by comparison to relevant reference values, standards, or controls. Information that relates to the truth or otherwise of the original assertion compared to standards is evidence. [2] 

Palliative care is a rapidly evolving, multidisciplinary field of practice. The types of evidence and knowledge produced within palliative care are accordingly varied and encompass many different types of research methodologies. Specific problems in research in the palliative care setting make some research exceedingly difficult to do, so that some study designs we might like to use to answer important questions relating to practice may never be available to us.

An evidence-based approach is one which turns to the evidence to answer clinical and service-related questions, and uses the best available evidence to do so. It involves appraising the quality of the evidence being used, and acknowledges the strength of the evidence for decision-making.

In practice, this means that CareSearch:

  • Includes many different types of research and evidence, and applies appropriate standards to each to assess their quality
  • Has developed a quality assurance process that is up-front and transparent, so that basic standards of evidence are met before a resource, link or reference is included in the site
  • Refers practitioners back to the literature to further explore most of the issues covered, and also provides pre-written PubMed literature search strategies for many important topics
  • Identifies areas of uncertainty in the literature, and gaps in the evidence base.

The breadth of this approach also requires a broad definition of the concept of 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]

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) Statement on Consumer and Community Involvement in Health and Medical Research. The statement 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, and as advocates for consumer needs and interests through groups such as the Consumers Health Forum of Australia. 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. [4] 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. Fostering collaboration in the area of palliative care research is essential and needed. [5]

    1. Australian Code for the Responsible Conduct of Research 2018. Canberra: National Health and Medical Research Council, Australian Research Council and Universities Australia. Commonwealth of Australia, 2018.
    2. Dammann O. Data, Information, Evidence, and Knowledge:: A Proposal for Health Informatics and Data Science. Online J Public Health Inform. 2019 Mar 5;10(3):e224. doi: 10.5210/ojphi.v10i3.9631.
    3. Canadian Health Services Research Foundation (CHSRF). Annual report 2005. Ottawa: CHSRF; 2005. p. 9.
    4. Australian Institute of Health and Welfare (AIHW). Palliative care services in Australia [Internet]. Canberra: AIHW; 2022. [cited 2022 May 11]. 
    5. Scholz B, Bevan A, Georgousopoulou E, Collier A, Mitchell I. Consumer and carer leadership in palliative care academia and practice: A systematic review with narrative synthesis. Palliat Med. 2019 Sep;33(8):959-968. doi: 10.1177/0269216319854012. Epub 2019 Jun 14.

    Page created 06 April 2022