Research, managed care, and patient privacy: Challenges to successful collaboration

• Objective: To illustrate the impact of increased patient privacy concerns on the conduct of research on managed care patients and to suggest mechanisms for successful collaboration between managed care organizations and academic research organizations. • Patients and setting: Government-funded collaborative research project involving an academic research organization and several managed care organizations. The context is a large coronary artery disease study in which patients were identified using managed care electronic files and then surveyed at 2 different times about their posthospital care. • Data collection/extraction methods: Data for the study included patient surveys as well as electronic claims files. The data relevant to this report are summaries of tracking files that were created for administrative purposes. • Results: The principal observations from this evaluation are: (1) fear of negative publicity for managed care organizations and, more importantly, increased patient privacy concerns create barriers to patient contact; (2) these challenges can have a dramatic effect on duration of a study and the ultimate response rate; (3) response rate can also depend on the mechanism by which the study is introduced to patients. • Conclusions: Managed care research is critical, but managed care organizations perceive significant risks to participation. The process of obtaining funding and executing a successful study would benefit from specific safeguards and sufficient incentives to offset the risks to managed care organizations.

Duke Scholars

Author Elizabeth Ray DeLong Biostatistics & Bioinformatics, Division of Biostatistics

Author Karen Patton Alexander Medicine, Cardiology

Author Daniel Benjamin Mark Medicine, Cardiology