Palliative Care Clinical Studies Collaborative

Professor Brian Le: The purpose of the Palliative Care Clinical Studies Collaborative really is to look and examine and to ask the important questions about the care that we provide. We do this by really asking the important questions, working out what's important to our patients and families with any particular needs that they have.

We work out how to answer these questions in a robust and methodical way and we test them in the real world to make sure that the treatments that we provide are really the best thing that are going to help our patients and their families in an effective and efficient manner.

Dr Tim Luckett: Randomised control trials are the gold standard for research evidence and without a randomised control trial we really don't know whether a given intervention is effective and, importantly, whether the harms might outweigh the benefits for a given group of patients. Some of PaCCSC's early trials with well established, well used interventions in palliative care proved just that, that the treatments did more harm than good for the patients we serve.

PaCCSC's most important asset is the diversity of our members. Involved in our collaborative, we have of course, first and foremost, clinicians, consumers from our Consumer Advisory Group and then a range of research experts. These experts come from backgrounds in trial designs, statistics, health economics, and they ensure that all the PaCCSC's research adheres to the best available methods without compromising the need to properly reflect real world practice and patient populations.

PaCCSC's expertise doesn't end with trial design. Our engine room is the IMPACCT Trial Coordination Centre who support trials throughout with patient recruitment, data management and safety reporting.

Professor Brian Le: Collaboration really is at the heart of everything we do in the collaborative. It's part of our name, it's part of our mission, it's part of the work that we do every day. That collaboration is with you, our members. It's from you that we get our ideas, grounded in the work that you are doing out there every day with the people that we look after.

It's collaboration with universities, it's collaboration with researchers both inside and, importantly, outside of palliative care because we need to get that perspective from people who look after these conditions from a variety of angles. That makes our work richer, more effective and more generalisable.

We collaborate with partners across the world to answer these questions, as well as government and regulatory agencies to make sure that our treatments are available to the people that need them.

Dr Tim Luckett: We always welcome new consumers interested in working with PaCCSC's on our research, so if you have experience, either as somebody with life limiting illness or as a family caregiver, please get in touch with us. You can help us to make sure future PaCCSC's research best serves the needs of consumers like you.