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Only the tip of the iceberg: A consumer perspective on breast cancer screening research and policy development
Leonie M. Short
Department of Public Health and Community Medicine, The University of Sydney
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.
References
ABC Radio 1995a 'Abreast of a raw deal', Encounter, Radio National, 11 January, 7.15-
8 pm.
ABC Radio 1995b 'The Spanish dancer', repeat of the Conning Out Show, Radio
National, 12 January, 7.15-8 pm.
Australian Cancer Society 1994 Breast cancer in Australia, a look at current breast
cancer research, treatment, support services and early detection in Australia, 1 6-page
Breast Cancer Guide, New Idea, 24 September.
Australian Senate 1994 Standing Committee on Community Affairs, Inquiry into Breast
Cancer Screening and Treatment.
Beral, V., Hermon, C, Reeves, G. and Peto, R. 1995 Sudden fall in breast cancer death
rates in England and Wales, The Lancet, 345, June 24, pp. 1642 - 1643.
Breast Cancer Action Group and the Consumers' Health Forum of Australia 1994 A
Consumer Perspective on the National Breast Cancer Centre. Canberra: Consumers'
Health Forum of Australia.
Butow, P. N., Kazemi, J. N., Griffin, A.-M., Dunn, S. M. and Tattersall, M. H. N. (in
press) Reducing the impact of a cancer diagnosis. Journal of Clinical Oncology.
110
Cockburn, J. and White, V. 1994 Review of Australian Research into Behavioural
Aspects of Screening Mammography. Melbourne: Centre for Behavioural Research in
Cancer.
Commonwealth of Australia 1994 Better Health Outcomes for Australians, National
Goals, Targets and Strategies for Better Health Outcomes Into the Next Century.
Canberra: Australian Government Publishing Service.
Consumers' Health Forum of Australia 1993 Representatives' Operating Procedures
Form. Canberra: Consumers' Health Forum of Australia.
Department of Health and Social Security 1986 Breast Cancer Screening: Report to the
Health Ministers of England, Wales, Scotland and Northern Ireland. Working Group
chaired by Sir Patrick Forrest. London: Welsh Office, Her Majesty's Stationery Office.
Gifford, S. 1993 'Breast cancer screening: beyond the fragments', In Touch, 10(5), p. 3-
4.
Glanville, L. 1994 The use of benchmarks to achieve quality in service development -
the Breastscreen Project, Health Issues, 40, pp. 23-25.
National Accreditation Committee of the National Program for the Early Detection of
Breast Cancer 1992 National Accreditation Guidelines. Canberra: Department of
Human Services and Health.
National Accreditation Committee of the National Program for the Early Detection of
Breast Cancer 1993 National Accreditation Guidelines. Canberra: Department of
Human Services and Health.
National Accreditation Committee of the National Program for the Early Detection of
Breast Cancer 1994 National Accreditation Guidelines. Canberra: Department of
Human Services and Health.
National Program for the Early Detection of Breast Cancer 1992 Kit for General
Practitioners. Canberra: National Program for the Early Detection of Breast Cancer.
National Program for the Early Detection of Breast Cancer 1994 Minimum Data Set (For
Screening and Assessment Services). Canberra: National Program for the Early
Detection of Breast Cancer.
Northrop, M. 1995 'Is there a role for consumers in GPEP?', General Practice
Evaluation News. 14, p.6.
Rachlis, M. and Kushner, C. 1989 Second Opinion, What's Wrong with Canada's
Health-Care System and How to Fix It. Toronto: Collins.
Roberts, M. M. 1989 Breast screening: time for a rethink?, British Medical Journal, 299,
November 4, pp. 1153 - 1155.
Short, L. 1992a 'Breast cancer screening', Health Forum, 24, pp. 5-7.
Short, L.M. 1992b 'Women are so stupid... that's why they need mammography!' in
Smith, A. (ed.) Women's Health in Australia, Second Edition. Armidale: University of
New England, pp. 123-137.
Short, L. M. 1995 'Advocacy or Cooption? A Consumer Perspective of Breast Cancer
Screening' in Broom, D. and Mauldon, E. From Hysteria to Hormones, Working Papers
in Women's Health, No.3 Proceedings of National Women's Health Research
Workshop. Canberra: National Centre for Epidemiology and Population Health, The
Australian National University, pp. 36-40.
Short, S.1989 'Community participation or community manipulation? A case study of
the lllawarra Cancer Appeal-a-thon', Community Health Studies, 13(1), p.34.
Skrabanek, P. 1991 The cost-effectiveness of breast cancer screening, International
Journal of Technology Assessment in Health Care, 7(4), pp. 633 - 635.
Smith, A. 1992 Women's Health in Australia., Second Edition. Armidale: University of
New England.
Stancombe Research and Planning, 1994 Developmental Qualitative Research
Amongst Women Aged 30 - 70 Years for the Communication Strategy for the National
Program for the Early Detection of Breast Cancer. Sydney: Stancombe Research and
Planning.
Sweet, M. 1994 'A cancer in the system', The Sydney Morning Herald, 19 September,
p.13.
Taylor, R. 1979 Medicine Out of Control. Melbourne: Sun.
Wright, C. J. and Mueller, C. B. 1995 Screening mammography and public health
policy: the need for perspective, The Lancet, 346, July 1, pp. 29 - 32.
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