A survey of patient advocates within the National Cancer Institute's Prostate Cancer SPORE Program: who are they? what motivates them? what might they tell us?

BACKGROUND: Interacting with patients, researchers, and administrators, patient advocates have a unique vantage point. Yet, few prior studies have sought to understand these individuals or to seek their opinions on cancer issues.
METHODS: A survey to address the foregoing was developed and mailed to advocates within the National Cancer Institute's Prostate Cancer SPORE Program.
RESULTS: A total of 10 of 19 advocates responded. All were men, most were retired, and all had faced a diagnosis of prostate cancer. Two major themes emerged: (1) the importance of patient education in promoting informed clinical decision-making and (2) a perceived need for patient-centered research by providers and educators.
CONCLUSIONS: Prostate cancer patient advocates provide a broad range of opinions on the spectrum of cancer care. Similar studies among advocates involved in other malignancies may be worthwhile.