Patient perspectives on research recruitment through cancer registries

Objective: To gain preliminary insight into patients' levels of awareness and preferences about research recruitment through cancer registries. Methods: We developed four questions about the North Carolina Central Cancer Registry's educational brochure and about patient preferences regarding physician involvement in research recruitment. These questions were included in the baseline interview conducted among 100 consecutively enrolled participants in the North Carolina Colorectal Cancer Care Outcomes Research Study, an ongoing observational study. Results: Patients who read the Registry's educational brochure generally reported that it helped them understand that a researcher could contact them, but only about one-fourth of patients recalled receiving and reading the brochure. Over two-thirds of patients said they preferred that researchers contact them directly about their interest in research participation, rather than checking with their physician first. Among patients who wanted their physician involved, most preferred a physician notification rather than a physician permission approach. Conclusions: Registry policies about patient education and physician involvement can have an important impact on researchers' ability to conduct population-based studies. Understanding patient perspectives is key to developing balanced policies that protect patients' privacy, as well as facilitate their opportunities to make autonomous decisions about participating in research.