CareSearch Blog: Palliative Perspectives

Who are we?
The Palliative Care Outcomes Collaboration (PCOC) is a nationally funded program that uses standardised clinical assessment tools to benchmark and measure patient outcomes in palliative care.

• PCOC is a collaboration between four universities, each represented by a chief investigator:
• Professor Kathy Eagar, University of Wollongong, New South Wales
• Professor David Currow, Flinders University, South Australia
• Professor Patsy Yates, Queensland University of Technology
• Dr Claire Johnson, University of Western Australia

Reflecting on what I do and what my responsibilities are as a Research Nurse is quite complex and one single role cannot encompass all the activities associated with clinical research trials.

Protocol development is the first phase of the project, where a team is involved in developing the protocol. From my perspective, knowledge and experience of a research nurse is indispensable in creating a good balance between the needs of the research and the patients involved.

Aileen Collier is a lecturer in Palliative and Supportive Services, Flinders University. Her research sits at the interface of social science and health research and is focused on human agency and safety and quality of palliative care. She also teaches in the Flinders University post-graduate program.

What advice can I offer you about nursing, research and improving health care?  Nurses, as the backbone of our health services, need to be highly responsive to direct patient care needs. If improvements in palliative care are to be realised however, we also need to enact what colleagues Jane Phillips and Meera Agar have recently described as “exemplary leadership”.  Our health care systems are complex, in constant flux and driven by efficiency and cost effectiveness.  We need to take an active role in policy development as well as critically adapting ‘top-down’ policy and evidence-based initiatives within local settings. In this environment, nurses simply cannot afford not to be able to make sense of research findings.
 

The Fourth International Conference on Grey Literature (GL '99) in Washington, DC, in October 1999 defined grey literature as ‘that which is produced on all levels of government, academics, business and industry in print and electronic formats, but which is not controlled by commercial publishers’.

Grey literature can include material that is not conventionally published and may be hard to find and sometimes ephemeral. It is not indexed formally in major databases and requires general web searching using a search engine such as Google. It can include such items as government reports and documents, state-of-the art reports, market research reports, theses, conference papers, technical specifications, and standards.
 

How much does palliative care cost? What are the costs for the patients and families? What are the most cost-effective ways to provide a palliative care service? Information about the costs of care is of perennial interest – not only to those who deliver it and fund it, but also to those who receive it. A thorough investigation of this information can be hard to do, because it is located in many different areas: it is not just found in scholarly databases but is also incorporated in websites, conference papers, blog posts, and other grey literature areas.