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• W2467933332 abstract "As discussed by social scientists in relation to AIDS,1 neuromuscular diseases,2 and, more generally, internet discussion groups3 and biomedical research,’ patient activism has been on the rise in recent years.5 Cancer is no exception. Presently, in the US, more than 850 cancer advocacy organisations and associations — most founded within the last 15 years — sometimes cooperate and sometimes compete in an extremely partisan (and increasingly controversial)6 environment. The most important of the cancer patient advocate groups, the National Breast Cancer Coalition, formed in 1991, now comprises over 600 member organisations and over 70,000 members.’ In 1993, eight different patient groups established the Cancer Leadership Council in an attempt to reach a consensus on health care reform; the Council now federates 33 groups. By the mid-1990s other associations began to put together their own strategies and increase their political visibility. In 1996, prostate cancer activists met to form the National Prostate Cancer Coalition (NPCC), and a coalition of advocacy groups came together under the name of the Intercultural Cancer Council in early 1995, calling for, among other things, greater participation of minority physicians and patients in clinical trials.8 Similar trends can be seen in Europe, where groups such as Europa Donna9 (breast cancer) and its counterpart Europa Uomo (prostate cancer), established respectively in 1993 and 2002, came together in 2003 with close to 200 other organisations under the umbrella of the European Cancer Patient Coalition (ECPC).10" @default.
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• W2467933332 date "2012-01-01" @default.
• W2467933332 modified "2023-10-06" @default.
• W2467933332 title "Cancer Research and Protocol Patients: From Clinical Material to Committee Advisors" @default.
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• W2467933332 doi "https://doi.org/10.1057/9781137272089_8" @default.
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