The Patient Perspective on Clinical Trials: Survey Results and Industry Implications

For the past several years, there has been increasing discussion of what patient centricity means in clinical trials. The premise is that better study designs, approaches, and services that are focused on the needs and preferences of patients can improve clinical research participation and, therefore, help advance the development of medicine and medical devices. Yet, despite the focus on this concept, the general consensus is that much work remains to realize its potential.

Previous research by the Center for Information and Study on Clinical Research Participation (CISCRP) has shown that patients typically partake in clinical research for both altruistic reasons and with hopes of benefiting their personal health. Other research has also begun to identify what patients want when participating in a trial.

While this is valuable research, the industry hasn’t addressed some important questions: Do patient needs and preferences vary by condition and other patient demographics? Could gaining a better understanding of patients’ lives and the factors that affect their decision to participate in the trial help to create a more attractive patient experience? Is it time to think about making the studies fit the patients’ needs better? What would it mean to move away from viewing patients as subjects in medical research, and engaging them as the stakeholders they are?

Antidote will be presenting the results of this survey at the 2019 Bridging Clinical Research & Clinical Health Care Collaborative on March 4-5 in Washington, D.C. 

During the summer of 2018, Antidote Technologies and SCORR Marketing partnered on a survey to gain a deeper understanding of patient perceptions of clinical trials and their motivations to participate. The survey also was designed to identify differences related to condition, household income, education, ethnicity, and gender.

Survey participants were recruited to participate by Antidote’s partners: American Kidney Fund, Allergy & Asthma Network, Healthline, JDRF, Lung Cancer Alliance, Lupus Research Alliance, Melanoma Research Alliance, and Multiple Sclerosis Association of America. Each partner organization distributed the survey to its membership through a combination of emails, website posts, and social media posts. Some worked with other partner organizations in their disease area to generate responses from caregivers and patients.