Recruiting Patients With Breast Cancer and Their Families to Behavioral Research in the Post-HIPAA Period

Purpose/Objectives: 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.

Data Sources: Published articles, books and book chapters, MEDLINE®, government agency information and HIPAA regulatory Web sites, and survey data.

Data Synthesis: 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.

Implications for Nursing: Regulations pose barriers to patient and family recruitment, but thoughtful systems actually can improve rates of recruitment.