The impact of patient advocacy: the University of California-San Francisco experience.

PURPOSE: Although the principal goals of health care advocacy are to raise awareness of specific issues and make them national priorities, it is important that physicians should recognize that advocacy is a multidimensional phenomenon. In 1997 a group of scientists, administrators, clinicians and patients met to discuss individual goals, needs and areas of mutual interest in the areas of prostate cancer care and research. A formal advocacy group was established and advocates were integrated into the administration and planning process in specific areas of the clinical and research program.
MATERIALS AND METHODS: In an effort to quantitate and communicate the impact of this group we assessed outcomes in the last 5 years in 4 areas matched to group interests and priorities, namely research, clinical trials, patient services and philanthropy.
RESULTS: Improvements in all assessed metrics were noted (18% to 1,796%), most substantially in the areas of research grants (286%) and philanthropy (1,796%). The highlight of the collaborative effort was the awarding of the University of California-San Francisco Prostate Cancer SPORE, which included a highly rated, formal advocacy core. Advocates initiated at least 25 new initiatives to improve patient services in the areas of access to care, patient education, psychosocial support, outreach, etc.
CONCLUSIONS: Since the initiation of a prostate cancer advocacy effort at our institution, substantial and quantitative improvements in several key metrics have been identified. Although an exact cause and effect cannot be stated with certainty, it seems likely. The successful collaboration was based on a multidimensional patient advocacy effort.