Only the Tip of the Iceberg

Abstract

This paper gives an historical account of a consumer perspective on breast cancer screening in Australia from the viewpoint of a rural woman from New South Wales who has represented consumers on the National Advisory Committee for the Early Detection of Breast Cancer. The account includes reasons why I started to research breast cancer screening and how the research was conducted as well as a summary of the research findings. Over the 5 year period of consumer representation, advocacy and research, my views on breast cancer screening have changed very little despite my role in national breast cancer screening policy development and in the management of the North West Breast Cancer Screening Service. My role in the development, implementation and evaluation of breast cancer screening policy in Australia is then discussed in terms of consumer advocacy versus bureaucratic cooption.