title: Recruiting patients with breast cancer and their families to behavioral research in the post-HIPAA period.
abstract: OBJECTIVE
  To describe a process for, response rates of, and indicated interest in recruiting patients with breast cancer and their spouses and family members from a clinical setting into behavioral and psychiatric research studies since the Health Insurance Portability and Accountability Act (HIPAA) regulations have taken effect.
  
  
  METHODS
  Published articles, books and book chapters, MEDLINE, government agency information and HIPAA regulatory Web sites, and survey data.
  
  
  RESULTS
  Response rates among the three target groups--patients, spouses and partners, and female first-degree relatives--were 77%, 95%, and 88%, respectively. Interest was high in the three target groups, with 77%, 87%, and 65% of responding patients, spouses and partners, and female first-degree relatives, respectively.
  
  
  CONCLUSIONS
  Taken together, these data indicate that high participation rates can be expected from patients with breast cancer and their families in clinical settings.
  
  
  CONCLUSIONS
  Regulations pose barriers to patient and family recruitment, but thoughtful systems actually can improve rates of recruitment.
authors: Fred Hutchinson Cancer Research Center, Seattle, WA, USA. dbowen@bu.org
authors: Deborah J
authors: DJ
authors: Bowen
authors: Jesse R
authors: JR
authors: Fann
authors: M Robyn
authors: MR
authors: Andersen
authors: Isaac C
authors: IC
authors: Rhew
authors: Julie R
authors: JR
authors: Gralow
authors: Frances M
authors: FM
authors: Lewis
authors: Julie R
authors: JR
authors: Hunt
authors: Melanie
authors: M
authors: Palomares
authors: Carol M
authors: CM
authors: Moinpour
authors: Donna P
authors: DP
authors: Ankerst
mesh_terms: D035841:Behavioral Research / Q000331:legislation & jurisprudence / Q000379:methods*; D001943:Breast Neoplasms / Q000523:psychology*; D015400:Clinical Nursing Research / Q000331:legislation & jurisprudence / Q000379:methods; D003219:Confidentiality / Q000331:legislation & jurisprudence*; D005190:Family / Q000523:psychology; D005260:Female; D020408:Health Insurance Portability and Accountability Act; D006801:Humans; D007258:Informed Consent / Q000331:legislation & jurisprudence*; D008297:Male; D018579:Patient Selection; D012107:Research Design; D018454:Spouses / Q000523:psychology; D014481:United States; D014861:Washington