Abstract My personal journey into breast cancer advocacy resulted from a diagnosis of low grade DCIS. I joined with others throughout the world in turning adversity into advocacy to support endeavors ...which further public and professional education, political change and scientific research. This path took me from a mere one woman networking effort to addressing national panels of experts in Washington, D.C. charged with improving quality of breast care. It often became more than a full time job but the rewards were worth it. My family also supported my mission and the potential impact that advocacy could make on both a personal and community level. So I follow in the footsteps of other tenacious advocates and always keep in mind the singular focus of improving standards for quality breast care now and in the future. This paper describes the ever-changing face of advocacy from my viewpoint as a breast cancer survivor.
EUROPA DONNA, a non-profit-making organisation, is a pan-European movement against breast cancer; it is a coalition that is active in 29 countries, each organised into national independent Fora. In ...each Forum, a postal survey was conducted between 2001 and 2002. A standardised questionnaire was used to collect information about Forum characteristics and activities, and perceptions of the adequacy of the local health service in relation to the prevention, diagnosis and treatment of breast cancer. Twenty-seven Fora (93%) participated in the survey. The results show the heterogeneity between the Fora in the services offered and activities in the different countries. The Fora also perceived a range of deficiencies in the prevention, diagnosis and treatment of breast cancer within their national health systems. These results highlight the importance of a coalition to establish a consensus among the Fora, and the need for coordinated initiatives in different European countries.
Providing information for patients is currently a growth need for health professionals, medical journals, and consumer associations. Despite several patients or consumers associations being active in ...Italy, scarce evidence is available on the volume and type of activities carried out. A national survey was carried out to investigate the volume and the nature of phone requests for information addressed to associations belonging to the Italian Forum of EUROPA DONNA, an European movement active in 28 countries, working to raise public awareness of breast cancer.
A structured questionnaire was sent to all EUROPA DONNA breast cancer associations to be filled in by the persons in charge for delivering the telephone information.
Of the 87 breast cancer associations contacted, 41 (47%) participated to the survey, completing a total of 2383 questionnaires for 4251 kinds of information. Most of the people who called were women and about 57% were breast cancer patients. A wide range of information were required: 29% on prevention, 22% on practical problems of daily life, 23% on services actually offered by breast cancer associations, 10% on psychological counselling, and finally 14% for advice on primary therapy and follow-up. In more than one-third of phone calls, people were looking for opinion from women who personally experienced a breast cancer.
This survey shows that breast cancer associations receive daily requests of information and convey a wide range of information. The findings underline the need to create meaningful partnership between health professionals and patient's associations in the complex field of information and communication.
Breast cancer is a serious medical and social problem, and the ultimate goal should be to promote accessible and financially sustainable high standard healthcare interventions and develop ...patient-oriented strategies for prevention, diagnosis, and treatment. EUROPA DONNA, a nonprofit organization, is a European women's movement against breast cancer. It provides a focus for the exchange of information and experience between members and serves as a moving force for combined actions. EUROPA DONNA represents the concerns and interests of European women to local and national authorities and governments, drawing attention to the need for improvement in or introduction of essential programs and services in the fight against breast cancer. It is a coalition of individual women and associations involved in the fight against breast cancer, active in 32 European countries, each organized as a national independent forum. Lobbying is one of the most important activities of EUROPA DONNA. In fact, only by involving institutions both on a local and a national level is it possible to achieve results that can benefit a large number of women.
Europa Donna is the first European woman's movement against breast cancer. It is a coalition of breast cancer associations and individual women and is active in 20 nations. Europa Donna is not ...intended to replace existing organizations. Rather, it provides a focus for the exchange of information and experiences between members and serves as a moving force for combined action. It promotes public awareness of breast cancer, advances in research and good clinical practice. In Italy there are more than 200 active breast cancer associations. The Italian forum of Europa Donna was formed in 1996. Between June and September 1996 a postal survey was conducted to research the characteristics and activities of the various breast cancer associations in Italy in order to help, inform and promote future initiatives of the Italian forum of Europa Donna. A total of 213 breast cancer associations were sent a postal questionnaire. Ninety‐five of them (44.6%) participated in the survey. The results show that the breast cancer associations in Italy vary markedly in terms of their structure and organization. The associations perceive a variety of deficiencies in the prevention, diagnosis and treatment of breast cancer within the Italian National Health Service and they offer a wide range of services themselves. Their views of the relevance of the 10 goals of Europa Donna vary. In this paper, we discuss the implications of the low rate of participation in the survey and the heterogeneity of the breast cancer associations' structures, activities and views for the future activities of the Italian forum of Europa Donna.
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