Patient and Public Perceptions in Canada about Decentralized and Hybrid Clinical Trials: “It’s about time we bring trials to people”

Abstract

Abstract Background Little is known about patient and the public perspectives on decentralized and hybrid clinical trials in Canada. Methods We conducted an online survey (English and French) promoted on social media to understand perspectives of people in Canada about decentralized and hybrid clinical trials. The survey had two sections. We co-produced this project entirely with patient, caregiver, and family partners. Results The survey had 284 (14 French) individuals who started or completed section 1, and 180 (16 French) individuals who started or completed section 2. People prefer to have options to participate in clinical trials where aspects are decentralized or hybridized. Seventy-nine percent of respondents preferred to have options related to study visits. There were concerns about handling adverse events or potential complications in decentralized trials, however, communication options such as a dedicated contact person for participants was deemed helpful. Most respondents were amenable to informed consent being done at a satellite site closer to home or via technology and were split on privacy concerns about this. Most preferred travel to a site within an hour, depending on what the trial was for or its impact on quality of life. Due to the response rate, we were unable to explore associations with gender, age, health status, geography, ethnicity, and prior clinical trial participation. Conclusion Our findings indicate an openness in Canada to participating in trials that decentralize or hybridize some aspects. These trials are perceived to provide benefits to participants and ways to increase equity and accessibility for participants.