title: 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?
abstract: 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.
authors.affiliation: Division of Molecular Pharmacology and Experimental Therapeutics, Mayo Clinic, Rochester, MN, USA.
authors.forename: Irina V
authors.initials: IV
authors.lastname: Kovtun
authors.forename: James
authors.initials: J
authors.lastname: Engh
authors.forename: Aminah
authors.initials: A
authors.lastname: Jatoi
mesh_terms: D000368:Aged; D035843:Biomedical Research / Q000458:organization & administration*; D003657:Decision Making; D007722:Health Knowledge, Attitudes, Practice; D006282:Health Personnel; D006801:Humans; D008297:Male; D008875:Middle Aged; D054547:National Cancer Institute (U.S.); D010344:Patient Advocacy; D010353:Patient Education as Topic; D010865:Pilot Projects; D011471:Prostatic Neoplasms / Q000175:diagnosis / Q000628:therapy; D011795:Surveys and Questionnaires; D014481:United States