Paediatric palliative care is a relatively new specialty and one that is often misunderstood.

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SYNOPSIS

The Mckeon review had as its central tenet that research should be integrated into healthcare. For many involved in healthcare delivery the need for such integration is obvious; however, there has been a gradual separation of these two activities over the past decade with an increased focus on healthcare cost management including the creation of Research Governance Frameworks. These frameworks are in many instances antagonistic to the concept of an integrated health/research model. This presentation will posit the notion that if we are to truly deliver better outcomes for patients we need to rethink our current clinical research environment and will use real examples from clinical trials, biobanking and molecular pathology to illustrate how this may be achieved in practice.

SPEAKERS

Dr Nik Zeps is a PhD scientist involved in translational research in breast, gastrointestinal and gynaecological malignancies. He is the Director of Research at SJGHC Subiaco Hospital and head of a translational research program that has established a biobank and clinical registry as a part of routine multidisciplinary cancer care. He is an Adjunct Associate Professor in the School of Surgery at the University of Western Australia and at Notre Dame Medical School. He is a member of the Research Committee of the National Health and Medical Research Council (NHMRC) of Australia. He has been involved in human research ethics since 2002 as a member of a Human Research Ethics Committee and in the Harmonisation of Multicentre Ethical Review processes at a national level. He was a member of the Australian Health Ethics Committee from 2006-2012. He is a member of the steering committee of the Global Summit of National Ethics Committees. He is the chair of the Cancer Biology Group of the Clinical Oncology Society of Australia and the Biological subcommittee of the Australasian Gastro-intestinal Trials Group and a member of the Research and Data Advisory Committee of Cancer Australia. He is the Australian representative on the Ethics and Policy Committee of the International Cancer Genome Consortium and a founding member of the Australasian Biospecimen Network. He is co-chair of the Science Policy Committee of the International Society for Biological and Environmental Repositories (ISBER).

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