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Incentives and barriers to neurological clinical research participation

Anne S Lindblad, Pam Zingeser, Nil Sismanyazici-Navaie

Background: Understanding barriers and incentives to neurological research participation may improve clinical trial enrollment. Results: Telephone-based focus groups were conducted with four neurological disorder patient groups (n = 22) and one caregiver group (n = 6). A total of 14 neurologists and neurosurgeons participated in structured interviews. Topics discussed included identifying ways in which health information is gathered and attitudes toward participation in medical research. Interestingly, 86% of physicians interviewed have referred patients to clinical trials and 82% of patients expressed interest in clinical trials participation. Patients cited their primary physician as the best source of health-related information, including information about clinical trials. Barriers to patients and physicians regarding clinical trials participation included compensation. Patients expressed concern about increased visit frequency and required treatment changes. Conclusion: Patients are willing to participate in clinical trials and physicians are willing to refer patients for participation with appropriate compensation for their time and sensitivity to change in care.