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Speaking Up for Ourselves: The Evolution of Consumer Advocacy in Health Care

Published online by Cambridge University Press:  10 March 2009

Hilda Bastian
Affiliation:
Consumers' Health Forum of Australia and Consumer Network of the Cochrane Collaboration

Abstract

Forces from communities and from health care are pushing toward more consumer involvement in health care internationally. This article addresses the philosophies and rationales behind this trend and traces the history and development of consumer advocacy in health care.

Type
Special Section: The Consumer And Technology
Copyright
Copyright © Cambridge University Press 1998

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References

REFERENCES

1.Agency for Health Care Policy and Research. Using clinical practice guidelines to evaluate quality of care, vol. 1: Issues. Washington, DC: U.S. Department of Health and Human Services, Public Health Service, 1995.Google Scholar
2.Albany Consulting Group. Integrating consumer views about quality in general practice. A report commissioned by Consumers' Health Forum and the Commonwealth Department of Human Services and Health. Canberra: Commonwealth of Australia, 1996.Google Scholar
3.Anspach, R. R.From stigma to identity politics: Political activism among the physically disabled and former mental patients. Social Science and Medicine, 1979, 13A, 765–73.Google Scholar
4.Australian Consumers' Association and Combined Pensioners' Association NSW. ‘Too much of a good thing’—A study of older consumers and their medications. Sydney: Australian Consumers' Association, 1988.Google Scholar
5.Bailey, M. E.Community-based organizations and CDC as partners in HIV education and prevention. Public Health Reports, 1991, 106, 702–08.Google Scholar
6.Baldry, E.The development of the health consumer movement and its effect on value changes and health policy in Australia. Unpublished Ph.D. thesis. Sydney: School of Health Services Management, The University of New South Wales, 1992.Google Scholar
7.Bastian, H.Consumer involvement in ethics committees—A postcard from the trenches. Health Forum, 1992, 24, 1112.Google Scholar
8.Bastian, H.The power of sharing knowledge: Consumer participation in the Cochrane Collaboration. Oxford: UK Cochrane Centre, 1994.Google Scholar
9.Bastian, H.Missing links: Some thoughts on consumers and health outcomes. Health Outcomes (Australian Institute of Health and Welfare), 1995, 5, 34.Google Scholar
10.Bastian, H.Raising the standard: Practice guidelines and consumer participation. International Journal for Quality in Health Care, 1996, 8, 485–90.Google Scholar
11.Bastian, H.Workshops for consumers. Australasian Cochrane Centre News, 1996, 2, 5.Google Scholar
12.Bastian, H (ed.). The Consumer Network Newsletter. Adelaide: Australasian Cochrane Centre, 1996.Google Scholar
13.Bastian, H.Review of deaths after planned home births: Update. Homebirth Australia Newsletter, 1996, 45, 2425.Google Scholar
14.Bell, D.Celebrating success 1988 to 1995: A history of the Marion-Brighton-Glenelg Health and Social Welfare Council. Adelaide: Marion-Brighton-Glenelg Health and Social Welfare Council, 1995.Google Scholar
15.Beresford, P. Researching citizen-involvement: A collaborative or colonising enterprise? In Barnes, M. & Wistow, G. (eds.). Researching user involvement. Leeds: The Nuffield Institute for Health Services Studies, University of Leeds, undated, 1632.Google Scholar
16.Bergman, A. B.The ‘discovery’ of sudden infant death syndrome: Lessons in the practice of political medicine. Seattle: University of Washington Press, 1986.Google Scholar
17.Bichmann, W., Rifkin, S. B., & Shrestha, M.Towards the measurement of community participation. World Health Forum, 1989, 10, 467–72.Google Scholar
18.Blaxter, M. Consumer issues within the NHS. In Consumers and research in the NHS: An R&D contribution to consumer involvement in the NHS. Leeds: Department of Health, 1995.Google Scholar
19.Boston Women's Book Collective. Our bodies, ourselves. New York: Simon and Schuster, 1971.Google Scholar
20.Bowling, A., Jacobson, B., & Southgate, L.Explorations in consultation of the public and health professionals on priority setting in an inner London health district. Social Science and Medicine, 1993, 37, 851–57.Google Scholar
21.Bromberger, B., & Fife-Yeomans, J.Deep sleep: Harry Bailey and the scandal of Chelmsford. Sydney: Simon and Schuster, 1991.Google Scholar
22.Broom, D. H.Damned if we do: Contradictions in women's health care. Sydney: Allen and Unwin, 1991.Google Scholar
23.Brotchie, J., & Wann, M.Training for lay participation in health: Token voices or champions of the people? London: The Patients Association, 1993.Google Scholar
24.Brown, P.Attitudes towards the rights of mental patients: A national survey in the United States. Journal of Social Science and Medicine, 1982, 16, 2025–39.Google Scholar
25.Browning, P., Thorin, E., & Rhoades, C.A national profile of self-help/self-advocacy groups of people with mental retardation. Mental Retardation, 1984, 22, 226–30.Google Scholar
26.Carter, B., Hussen, E., Abbott, L., et al. Borning: Pmere Laltyeke Anwerne Ampe Mpwaretyeke—Congress Alukura by the Grandmother's Law. A report prepared by the Central Australian Aboriginal Congress. Australian Aboriginal Studies, 1987, 1, 233.Google Scholar
27.Catalan, J., Brener, N., Andrews, H., et al. Whose health is it? Views about decisionmaking and information-seeking from people with HIV infection and their professional carers. AIDS Care, 1994, 6, 349–56.Google Scholar
28.Cavallo, S. Charity, power, and patronage in eighteenth-century Italian hospitals: The case of Turin. In Granshaw, L. and Porter, R. (eds.), The hospital in history. London: Routledge, 1990, 93122.Google Scholar
29.Center for Communication Dynamics. Attitudes of advocacy groups: AIDS and cancer policy. Pennsylvania: Rhone-Poulenc Rorer, 1992.Google Scholar
30.Chalmers, I.British debate on obstetric practice. Pediatrics, 1976, 58, 308–12.Google Scholar
31.Chalmers, I.What do I want from health research and researchers when I am a patient? British Medical Journal, 1995, 310, 1315–18.Google Scholar
32.Chetley, A.The baby killer scandal: A War on Want investigation into the promotion and sale of powdered baby milks in the Third World. London: War on Want, 1979.Google Scholar
33.Consumers' Association of Canada. Policy statement on consumers and health care. Ottawa: Consumers' Association of Canada, 1989.Google Scholar
34.Consumers' Health Forum of Australia. Towards a national medicinal drug policy for Australia. Canberra: Consumers' Health Forum of Australia, 1989.Google Scholar
35.Consumers' Health Forum of Australia. Guidelines for consumer representatives: Suggestions for consumer or community representatives working on public committees, 2nd ed.Canberra: Consumers' Health Forum of Australia, 1990.Google Scholar
36.Consumers' Health Forum of Australia. A report to the Biennial General Meeting for the period 1990–1992. Canberra: Consumers' Health Forum of Australia, 1992,1617.Google Scholar
37.Consumers' Health Forum of Australia. 1996 annual report. Canberra: Consumers' Health Forum of Australia, 1996, 5.Google Scholar
38.Consumers' Health Forum of Australia. The constitution of the Consumers' Health Forum of Australia Incorporated, as amended at the Biennial General Meeting, 10 October 1996. Canberra: Consumers' Health Forum of Australia, 1996.Google Scholar
39.Consumers International. The world consumer movement in 1994. In Cook, K. (ed.), Consumers International 1994 annual report. Santiago: Consumers International Regional Office for Latin America and the Caribbean, 1995.Google Scholar
40.Daniels, K., Murnane, M., & Picot, A.Women in Australia: An annotated guide to records. Canberra: Australian Government Publishing Service, 1977.Google Scholar
41.Davies, M. L.Maternity: Letters from working women. London: Virago Press, 1978. (First published by G. Bell & Sons, 1915.)Google Scholar
42.Dickersin, K., & Schnaper, L. Reinventing medical research. In Moss, K. L. (ed.), Man-made medicine: Women's health, public policy, and reform. Durham, NC: Duke University Press, 1996, 5776.Google Scholar
43.Donabedian, A.The Lichfield lecture—Quality assurance in health care: Consumers' role. Quality in Health Care, 1992, 1, 15.Google Scholar
44.Draper, M., & Hill, S.The role of patient satisfaction surveys in a national approach to hospital quality management. Canberra: Department of Human Services and Health, 1995.Google Scholar
45.Drew, N. C., Salmon, P., & Webb, I.Mothers', midwives' and obstetricians' views on the features of obstetric care which influence satisfaction with childbirth. British Journal of Obstetrics and Gynaecology, 1989, 96, 1084–88.Google Scholar
46.Dunant, S. (ed.). The war of the words: The political correctness debate. London: Virago, 1994.Google Scholar
47.Dwyer, J.The politics of participation. Community Health Studies, 1989, 13, 5965.Google Scholar
48. (Ed.). The Arlwekere celebration. Aboriginal and Islander Health Worker Journal, 1994, 18, 22.Google Scholar
49.Ellwood, P. M.Shattuck lecture—Outcomes management: A technology of patient experience. New England Journal of Medicine, 1988, 318, 1549–56.Google Scholar
50.Eyerman, R., & Jamison, A.Social movements: A cognitive approach. Cambridge: Polity Press, 1991.Google Scholar
51.Farnill, D., & Inglis, S.Patients' desire for information about anaesthesia: Australian attitudes. Anaesthesia, 1994, 49, 162–64.Google Scholar
52.Fintor, L.Patient activism: Cancer groups become vocal and politically active. Journal of the National Cancer Institute, 1991, 83, 528–29.Google Scholar
53.Fox, P.From senility to Alzheimer's disease: The rise of the Alzheimer's disease movement. Milbank Quarterly, 1989, 67, 58102.Google Scholar
54.Freda, M. C., Andersen, H. F., Damus, K., & Merkatz, I. R.What pregnant women want to know: A comparison of client and provider perceptions. Journal of Obstetric, Gynecologic and Neonatal Nursing, 1993, 22, 237–44.CrossRefGoogle Scholar
55.Gibbons, T.Board members' responsibility increasing. Hospital and Healthcare, 1990, 21, 1920.Google Scholar
56.Goodare, G., & Smith, R.The rights of patients in research. British Medical Journal, 1995, 310, 1277 –78.Google Scholar
57.Granshaw, L., & Porter, R. (eds.). The hospital in history. London: Routledge, 1990.Google Scholar
58.Grimshaw, J., Freemantle, N., Wallace, S., & Russell, I.Developing and implementing clinical practice guidelines. Quality in Health Care, 1995, 4, 5564.Google Scholar
59.Henderson, J. The hospitals of late-medieval and Renaissance Florence: A preliminary survey. In Granshaw, L. & Porter, R. (eds.), The hospital in history. London: Routledge, 1990, 6392.Google Scholar
60.Henderson, L. Endometriosis clinic. In Making quality count: Proceedings of Consumers' Health Forum's national conference 1995. Canberra: Consumers' Health Forum of Australia, 1996, 2326.Google Scholar
61.Hogan, M.Legal recognition and protection of the rights of health consumers. Canberra: Consumers' Health Forum of Australia, 1990.Google Scholar
62.Hole, J., & Levine, E. The first feminists. In Freeman, J. (ed.). Women: A feminist perspective. Palo Alto: Mayfield Publishing Company, 1975, 436–47.Google Scholar
63.Ijsselmuiden, C. B., & Faden, R. R.Research and informed consent in Africa: Another look. New England Journal of Medicine, 1992, 326, 830–34.Google Scholar
64.International Organisation of Consumer Unions. Protecting tomorrow's world today. Penang: International Organisation of Consumer Unions, 1983.Google Scholar
65.International Organisation of Consumer Unions. Consumer manifesto 2000. New York: International Organisation of Consumer Unions, 05 1986.Google Scholar
66.International Organisation of Consumer Unions. The Montevideo declaration. Montevideo: International Organisation of Consumer Unions, 10 1986.Google Scholar
67.International Organisation of Consumer Unions. Kontakt: Newsletter for central and eastern Europe. London: International Organisation of Consumers Unions, 07/08 1994.Google Scholar
68.Jachuck, S., Brierley, H., & Willcox, P.The effect of hypotensive drugs on quality of life. Journal of the Royal College of General Practitioners, 1982, 32, 103–05.Google Scholar
69.Jeffery, P., Jeffery, R., & Lyon, A.Labour pains and labour power: Women and childbearing in India. New Delhi: Manohar, 1989.Google Scholar
70.Kearney, J.Healthy participation: Achieving greater public participation and accountability in the health care system. National Health Strategy Background Paper No. 12. Canberra: National Health Strategy, 1993.Google Scholar
71.Kelson, M.Consumer involvement initiatives in clinical audit and outcomes: A review of developments and issues in the identification of good practice. Commissioned by Department of Health Clinical Outcomes Group. London: College of Health, 1995.Google Scholar
72.Laurance, J. Who decides whether a little girl lives? The Times, 07 27, 1995.Google Scholar
73.Lee, S. K., Penner, P. L., & Cox, M.Comparison of the attitudes of health care professionals and parents towards active treatment of very low birth weight infants. Pediatrics, 1991, 88, 110–14.Google Scholar
74.Levenson, P. M., Smith, P. B., & Morrow, J. R.A comparison of physician-patient views of teen prenatal information needs. Journal of Adolescent Health Care, 1986, 7, 611.Google Scholar
75.Lomas, J. Retailing research: Increasing the role of evidence in clinical services for childbirth. In Cleary, P. D. (ed.), The Milbank Quarterly: Effective care in pregnancy and childbirth. New York: Cambridge University Press, 1993.Google Scholar
76.Lynam, L. E., & Miller, M. A.Mothers' and nurses' perceptions of the needs of women experiencing preterm labor. Journal of Obstetric, Gynecological and Neonatal Nursing, 1991, 21, 126–36.Google Scholar
77.McDonnell, K. (ed.). Adverse effects: Women and the pharmaceutical industry. Penang: International Organization of Consumer Unions, 1986.Google Scholar
78.McLean, A.Empowerment and the psychiatric consumer/ex-patient movement in the United States: Contradictions, crisis and change. Social Science and Medicine, 1995, 40, 1053–71.Google Scholar
79.McNeill, P. M.The ethics and politics of human experimentation. Cambridge: Cambridge University Press, 1993.Google Scholar
80.McNeill, P. M., Berglund, C. A., & Webster, I. W.How much influence do various members have within research ethics committees? Cambridge Quarterly of Healthcare Ethics, 1994, 3, 522–32.Google Scholar
81.Martin, B.Scientific knowledge in controversy: The social dynamics of the fluoridation debate. Albany: State University of New York Press, 1991.Google Scholar
82.Matrice, D., & Brown, V. (eds.). Widening the research focus: Consumer roles in public health research. Canberra: Consumers' Health Forum of Australia, 1990.Google Scholar
83.Melrose, D.Bitter pills: Medicines and the Third World poor. Oxford: Oxfam, 1982.Google Scholar
84.Miller, M., & Walker, R. (eds.). Health promotion: The community health approach. Papers from the 2nd National Conference of the Australian Community Health Association. Sydney: Australian Community Health Association, 1989.Google Scholar
85.Milne, R., & Oliver, S.Evidence-based consumer health information: Developing teaching in critical appraisal skills. International Journal for Quality in Health Care, 1996, 8, 439–45.Google Scholar
86.National Aboriginal and Islander Health Organisation. Guidelines on ethical matters in Aboriginal and Torres Strait Islander health research. Report of the (1987) National Workshop on Ethics of Research in Aboriginal Health. Canberra: National Health and Medical Research Council, 1991.Google Scholar
87.National Aboriginal Health Strategy Working Party. A National Aboriginal Health Strategy. Canberra: Department of Aboriginal Affairs, 1989.Google Scholar
88.National Health and Medical Research Council, Quality of Care and Health Outcomes Committee. Guidelines for the development and implementation of clinical practice guidelines. Canberra: Commonwealth Department of Human Services and Health, 1995.Google Scholar
89.National Health Service Executive. Promoting clinical effectiveness: A framework for action in and through the NHS. Leeds: NHS Executive, 1996.Google Scholar
90.Olden, A. J., Jordan, E. T., Sakima, N. T., & Grass, J. A.Patients' versus nurses' assessments of pain and sedation after cesarean section. Journal of Obstetric, Gynecological and Neonatal Nursing, 1995, 24, 137–41.Google Scholar
91.Oliver, S. R.How can health service users contribute to the NHS research and development programme? British Medical Journal, 1995, 310, 1318–20.Google Scholar
92.Orth-Gomer, K., Britton, M., & Rehnqvist, N.Quality of care in an outpatient department: The patients' view. Social Science and Medicine, 1979, 13A, 347–51.Google Scholar
93.Palmer, G.The politics of breastfeeding. London: Pandora, 1988.Google Scholar
94.Payer, L.Medicine and culture: Varieties of treatment in the United States, England, West Germany, and France. New York: Penguin, 1988.Google Scholar
95.Porter, R. The gift relation: Philanthropy and provincial hospitals in eighteenth-century England. In Granshaw, L. & Porter, R. (eds), The hospital in history. London: Routledge, 1990, 149–78.Google Scholar
96.Pripstein, J.When science and passion meet: The impact of AIDS on research. Canadian Medical Association Journal, 1993, 148, 638–42.Google Scholar
97.Reade, C.Consumer rights issue. Health Forum, 1987, 3, 28.Google Scholar
98.Reade, C.New national committee to consider a rational drug policy? Health Forum, 1991, 17, 1921.Google Scholar
99.Reade, C., & Sylvan, S.Update on informed consent issue. Health Forum, 1988, 6, 1013.Google Scholar
100.Reilly, B. M., Magnussen, C. R., Ross, J., et al. Can we talk? Inpatient discussions about advance directives in a community hospital: Attending physicians' attitudes, their inpatients' wishes, and reported experience. Archives of Internal Medicine, 1994, 154, 2299–308.Google Scholar
101.Reiser, S. J.The era of the patient: Using the experience of illness in shaping the missions of health care. Journal of the American Medical Association, 1993, 269, 1012–17.Google Scholar
102.Rice, M. S.Working-class wives: Their health and conditions. London: Penguin, 1939.Google Scholar
103.Rockwell, G. R. The role and function of the public member. Federation Bulletin (Federation of State Medical Boards, USA), 1993, Spring, 4244.Google Scholar
104.Rubin, M. Development and change in English hospitals, 1100–1500. In Granshaw, L. & Porter, R. (eds.), The hospital in history. London: Routledge, 1990, 4159.Google Scholar
105.Russell, H., & Szoke, H.Review of consumer participation in the National Health an Medical Research Council. Canberra: Consumers' Health Forum of Australia, 1990.Google Scholar
106.Sax, S.Report of the inquiry into hospital services in South Australia. Adelaide: South Australian Health Commission, 1983.Google Scholar
107.Sax, S.A strife of interests: Politics and policies in Australian health services. Sydney: Allen and Unwin, 1984.Google Scholar
108.Schuman, A. N., & Marteau, T. M.Obstetricians' and midwives' contrasting perceptions of pregnancy. Journal of Reproductive and Infant Psychology, 1993, 11, 115–18.Google Scholar
109.Schwarz, S. L.(moderator). Nonscientist participation in the peer review process: Is it desirable? Is it implementable? Who are the nonscientists who should become involved? A panel discussion. Annals of the New York Academy of Science, 1981, 2, 213–28.Google Scholar
110.Shapiro, M. C., Najman, J. M., Chang, A., et al. Information control and the exercise of power in the obstetrical encounter. Social Science and Medicine, 1983, 17, 139–46.Google Scholar
111.Shearer, M. H. Maternity patients' movements in the United States, 1820–1985. In Chalmers, I., Enkin, M. & Keirse, M. J. N. C. (eds.), Effective care in pregnancy and childbirth, vol. 1. Oxford: Oxford University Press, 1990, 110–30.Google Scholar
112.Shearer, M. H.Maternity patients' advocates in the 1990s: Changing debates and new debaters. International Journal of Technology Assessment in Health Care, 1991, 7, 517–29.Google Scholar
113.Sigsworth, E. M., & Wyke, T. J. A study of Victorian prostitution and venereal disease. In Vicinus, M. (ed.), Suffer and be still: Women in the Victorian age. Bloomington: Indiana University Press, 1972, 7799.Google Scholar
114.Slevin, M. L, Stubbs, L., Plant, H. J., et al. Attitudes to chemotherapy: Comparing views of patients with cancer with those of doctors, nurses, and general public. British Medical Journal, 1990, 300, 1458–60.Google Scholar
115.Smith, M.If everyone is equal.... Health Forum, 1993, 28, 1012.Google Scholar
116.Smith, S. L.Sick and tired of being sick and tired: Black women's health activism in America, 1890–1950. Pennsylvania: Pennsylvania Press, University of Philadelphia, 1995.Google Scholar
117.Stacey, M. The health service consumer: A sociological misconception. Monograph 22. Sociological Review, 1974, 194200.Google Scholar
118.Stanfield, A.Understanding and using health research literature: Consumers' research workshop. Canberra: Consumers' Health Forum of Australia, 1996.Google Scholar
119.Strosberg, M. A., Weiner, J. M., Baker, R., & Fein, I. A. (eds.). Rationing America's medical care: The Oregon plan and beyond. Washington, DC: The Brookings Institution, 1992.Google Scholar
120.Surgeon of Brisbane Hospital. Suggestions for better management of the Lock Hospital. In Daniels, K., Murnane, M. & Picot, A. (eds.), Women in Australia: An annotated guide to records. Canberra: Australian Government Publishing Service, 1977, 4.Google Scholar
121.Swales, J. D.The Leicester anti-vaccination movement. Lancet, 1992, 340, 1019–21.Google Scholar
122.Sylvan, L., & Legge, D. Community participation in health. The Consumers' Health Forum of Australia and the Victorian District Health Councils Program: Case studies in the implementation of healthy public policy. In Miller, M. & Walker, R. (eds.), Health promotion: The community health approach. Papers from the 2nd National Conference of the Australian Community Health Association. Sydney: Australian Community Health Association, 1989, 5878.Google Scholar
123.Tanida, N.Japanese attitudes towards truth disclosure in cancer. Scandinavian Journal of Social Medicine, 1994, 22, 5057.Google Scholar
124.Tanner, L. B.Voices from women's liberation. New York: Signet, 1971.Google Scholar
125.Vaughan, M.Curing their ills: Colonial power and African illness. Cambridge: Polity Press, 1991.Google Scholar
126.Wachter, R. M.AIDS, activism, and the politics of health. New England Journal of Medicine, 1992, 326, 128–33.Google Scholar
127.Wade, T.Challenging the myths of mental illness. Health Forum, 1995, 34, 1719.Google Scholar
128.Waissman, R.A protest movement in a private clinic: An analysis of a patients' strike. Social Science and Medicine, 1985, 20, 129–32.Google Scholar
129.Wilson, A. N. Josephine Butler. In Wilson, A. N. (ed.), Eminent Victorians. London: BBC Books, 1989, 163202.Google Scholar
130.World Health Organization. Declaration of Alma-Ata: Report of the International Conference on Primary Health Care. Geneva: World Health Organization, 1978.Google Scholar
131.World Health Organization. Ottawa Charter for Health Promotion. Ottawa: Health and Welfare Canada, and Canadian Public Health Association, 1986.Google Scholar
132.Wright, A. L.Models of mystery: Physician and patient perceptions of sudden infant death syndrome. Social Science and Medicine, 1988, 26, 587–95.Google Scholar
133.Yelding, D.Consumers and health: A report for the Consumer Policy Service. UK: Research Institute for Consumer Affairs, 1992.Google Scholar