Weighing Open Science Against Research Participation Burden in Informed Consent: A Randomized Pilot Study

Deciding to participate in clinical research requires patients to evaluate various trial characteristics. This survey study measured the influence of trial characteristics (visit volume and open data sharing) on willingness to participate in patients with Parkinson's disease. Patients were randomized to either evaluate two trials (joint condition) or a single trial (separate condition). For patients who evaluated both trials, willingness to participate was greater in the restricted science protocol with fewer visits (7.60 vs. 7.12; mean difference, -0.48; 95% CI, -0.83 to -0.14). Patients who evaluated both trials were less willing to participate in the study involving more visits than patients who only evaluated the study involving more visits (7.12 vs. 8.14; mean difference, 1.02; 95% CI, 0.30 to 1.74). Patients have difficulty evaluating information about open science and visit burden when information is presented separately. Although views toward open science were favorable, preferences for fewer visits dominated decisions.