The Research Context

Palliative care research in Australia has had a rapid period of growth and development as a result of support of a National Palliative Care Program (2000 - 2010) funded by the Department of Health of Ageing. The Program was implemented following the Australian Health Ministers' Advisory Council endorsement of the first National Palliative Care Strategy in October 2000. Research and project work was undertaken within each of four major focus areas and resulted in a rich, diverse and productive series of investigations.

One of the four focus areas in the program was research and quality improvement for palliative care services. This focus area included a joint initiative with the National Health and Medical Research Council (NHMRC) called the Palliative Care Research Program (2001 - 2010). A second focus area looked at increased access to palliative care medicines in the community which included funding for a clinical research collaborative, the Palliative Care Clinical Studies Collaborative (PaCCSC).

PaCCSC is a unique model for research. It is a national collaborative, based at Flinders University. Through the National Palliative Care Program, funding was given specifically to develop rigorous prospective multisite clinical trials so medications of importance to palliative care - if shown to be effective and safe - can be listed in the national Pharmaceutical Benefits Schedule for a palliative care indication. In this way the studies will improve access to these medications for palliative care patients and improve patient safety.

Funded PaCCSC studies to date relate to conditions common in palliative care (pain, dyspnoea, delirium, bowel obstruction, and cachexia). They have all been designed to include quality of life outcomes, include new ways of studying health economic impacts of the study conditions and the treatments, and methodically look for adverse effects of treatments.

Other strategies included in the NHMRC Palliative Care Research Program were: 

  • Research Development Grants
  • Priority Driven Research Grants
  • Training Awards, comprising PhD Scholarships and Postdoctoral Fellowships.

During this period of research focus, a number of specialist research groups in Australia have emerged, usually as collaborations between academic institutions and clinicians. These have contributed significantly to the development of the palliative care field. Some groups are specifically focused on palliative care, whilst others cross disciplines and are close collaborators with palliative care researchers. These include:

The capacity-building associated with the whole set of nationally funded palliative care programs has not yet been fully evaluated. However, over the last decade Australian palliative care clinicians have had greatly increased opportunities to become involved in rigorous clinical trials, well-designed qualitative studies and health services research. Practical learnings from this research program are being widely shared within the palliative care community, nationally and internationally.

Some examples of the new research in these areas include:

  • Aspects of designing randomised controlled trials for palliative care settings [1-7,11]
  • Issues related to ethics approval and adverse effect reporting in palliative care studies [8-9]
  • World first guidelines for palliative care in residential aged care and companion guidelines for palliative care for older people living in the community 
  • Specific approaches to health economic assessment that capture what is important in palliative care [10]
  • New methodologies to improve the quality and feasibility of palliative care research, for instance “n of 1 trials” [11] or population estimates [12]
  • New strategies to improve searching and retrieval of palliative care evidence [13-14]
  • Issues in quality improvement activities [15-16] and
  • Understanding the characteristics of carer populations and palliative care populations [17-19].
  1. Shelby-James TM, Hardy J, Agar M, Yates P, Mitchell G, Sanderson C, et al. Designing and conducting randomized controlled trials in palliative care: a summary of discussions from the 2010 clinical research forum of the Australian Palliative Care Clinical Studies Collaborative. Palliat Med. 2012 Dec;26(8):1042-7. Epub 2011 Aug 15.
  2. Abernethy AP, Currow DC, Wurzelmann J, Janning SW, Bull J, Norris JF, et al. Enhancing enrollment in palliative care trials: key insights from a randomized, placebo-controlled study. J Support Oncol. 2010 May-Jun;8(3):139-44. (No abstract available)
  3. Currow DC, Shelby-James TM, Agar M, Plummer J, Rowett D, Glare P, et al. Planning phase III multi-site clinical trials in palliative care: the role of consecutive cohort audits to identify potential participant populations. Support Care Cancer. 2010 Dec;18(12):1571-9. Epub 2009 Nov 29.
  4. Abernethy AP, Clark K, Currow DC. How should we conduct and interpret phase III clinical trials in palliative care? J Pain Symptom Manage. 2010 Jan;39(1):e6-8. Epub 2009 Oct 28. (No abstract available)
  5. Grbich C, Abernethy AP, Shelby-James T, Fazekas B, Currow DC. Creating a research culture in a palliative care service environment: a qualitative study of the evolution of staff attitudes to research during a large longitudinal controlled trial (ISRCTN81117481). J Palliat Care. 2008 Summer; 24(2):100-9.
  6. Abernethy AP, Currow DC. Culture and financing influence palliative care services, study populations, and generalizability of research findings. J Palliat Med. 2008 Mar;11(2):146. (No abstract available)
  7. Currow DC, Agar M, Tieman J, Abernethy AP. Multi-site research allows adequately powered palliative care trials; web-based data management makes it achievable today. Palliat Med. 2008 Jan;22(1):91-2. (No abstract available)
  8. Hardy J, Shelby-James T, Currow DC. Research in palliative care: is death always an adverse event? Intern Med J. 2010 Jan;40(1):89-90. (No abstract available)
  9. Shelby-James T, Agar MR, Currow DC. A case study evaluation of ethics review systems for multicentre clinical trials. Med J Aust. 2010 Mar 1;192(5):292. (No abstract available)
  10. McCaffrey N, Currow DC, Eckermann S. Measuring impacts of value to patients is crucial when evaluating palliative care. J Pain Symptom Manage. 2009 Jun;37(6):e7-9. (No abstract available)
  11. Nikles J, Mitchell GK, Schluter P, Good P, Hardy J, Rowett D, et al. Aggregating single patient (n-of-1) trials in populations where recruitment and retention was difficult: the case of palliative care. J Clin Epidemiol. 2011 May;64(5):471-80. Epub 2010 Oct 8.
  12. McNamara B, Rosenwax LK, Holman CD. A method for defining and estimating the palliative care population. J Pain Symptom Manage. 2006 Jul;32(1):5-12.
  13. 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.
  14. Sladek R, Tieman J, Fazekas BS, Abernethy AP, Currow DC. Development of a subject search filter to find information relevant to palliative care in the general medical literature. J Med Libr Assoc. 2006 Oct;94(4):394-401.
  15. Eagar K, Watters P, Currow DC, Aoun SM, Yates P. The Australian Palliative Care Outcomes Collaboration (PCOC)--measuring the quality and outcomes of palliative care on a routine basis. Aust Health Rev. 2010 May;34(2):186-92.
  16. To TH, Ong WY, Rawlings D, Greene A, Currow DC. The disparity between patient and nurse symptom rating in a hospice population. J Palliat Med. 2012 May;15(5):542-7. Epub 2012 Mar 9.
  17. Lewis JM, Digiacomo M, Luckett T, Davidson PM, Currow DC. A social capital framework for palliative care: Supporting health and well-being for people With life-limiting illness and their carers through social relations and networks. J Pain Symptom Manage. 2012 Jul 11.
  18. Currow DC, Burns C, Agar M, Phillips J, McCaffrey N, Abernethy AP. Palliative caregivers who would not take on the caring role again. J Pain Symptom Manage. 2011 Apr;41(4):661-72. Epub 2011 Jan 12.
  19. Currow DC, Tieman JJ, Greene A, Zafar SY, Wheeler JL, Abernethy AP. Refining a checklist for reporting patient populations and service characteristics in hospice and palliative care research. J Pain Symptom Manage. 2012 May;43(5):902-10. Epub 2012 Mar 21.
Last updated 09 February 2017