Affiliations: Department of Medicine, University of California at San Francisco, The Carol Franc Buck Breast Care Center, 2356 Sutter Street, 6th floor, Box 1714, San Francisco, CA 94143-1714, USA
Abstract: Although still in a continual state of evolution, breast cancer advocacy has come of age in the last few years. Advocacy is a very broad term that can be defined as the viewpoint of a breast cancer patient or survivor, or a viewpoint that is fully patient centered. In the area of clinical care and research, a cooperative atmosphere has developed that has required a close working relationship and understanding of cultures between advocates and those in the professional medical care and research communities. Interaction with patients and decision makers, which reflects individual values and preferences, requires a firm knowledge of medical outcomes; in this way, the advantages and disadvantages of a screening, diagnostic, or treatment plan can be analyzed. Moreover, a clear communication strategy needs to be in place to convey these concepts to patients and to elicit their individual choices and concerns. The development of optimal, shared decision making will require ongoing innovations in all these areas, and some are now being piloted and tested in the areas of screening, prevention, and treatment. The role of advocacy in research has likewise involved a sharp learning curve from both sides. Multiple models of mutual education, exchange of ideas, and the conversion of this interaction into research strategies are now in place in many settings. The intent of such interaction is to move forward with discovery and clinical application in a way that forces a rethinking and innovation of approaches but emphasizes proper scientific methodology. Patient-focused themes of relevance to patients with breast cancer, timely translation to the clinic, and a broader scope of research and ideas are all being integrated into the scientific review process. An emphasis on advocacy issues, along with stepwise scientific progress, will be essential in the new era of rapid technology development, clinical testing, and adoption into the standard of patient care.
DOI: 10.3233/BD-1998-105-602
Journal: Breast Disease, vol. 10, no. 5-6, pp. 3-14, 1998
