So Different, yet So Similar: Meta-Analysis and Policy Modeling of Willingness to Participate in Clinical Trials among Brazilians and Indians

Abstract

BackgroundWith the global expansion of clinical trials and the expectations of the rise of the emerging economies known as BRICs (Brazil, Russia, India and China), the understanding of factors that affect the willingness to participate in clinical trials of patients from those countries assumes a central role in the future of health research.MethodsWe conducted a systematic review and meta-analysis (SRMA) of willingness to participate in clinical trials among Brazilian patients and then we compared it with Indian patients (with results of another SRMA previously conducted by our group) through a system dynamics model.ResultsFive studies were included in the SRMA of Brazilian patients. Our main findings are 1) the major motivation for Brazilian patients to participate in clinical trials is altruism, 2) monetary reimbursement is the least important factor motivating Brazilian patients, 3) the major barrier for Brazilian patients to not participate in clinical trials is the fear of side effects, and 4) Brazilian patients are more likely willing to participate in clinical trials than Indians.ConclusionOur study provides important insights for investigators and sponsors for planning trials in Brazil (and India) in the future. Ignoring these results may lead to unnecessary fund/time spending. More studies are needed to validate our results and for better understanding of this poorly studied theme.

Post-trial access to study medication: a Brazilian e-survey with major stakeholders in clinical research

“…These results were similar to a recent study, which also demonstrated altruism-related motivations as major reasons for Brazilian patients to participate in clinical research 30. However, among the other groups, the major reason for patients would be access to better healthcare as well as access to treatment alternatives for their diseases, reflecting personal benefits as motivation, which are also described in the literature.…”

Willingness to Participate in Clinical Trials among Patients of Chinese Heritage: A Meta-Synthesis

“…For example, studies in a variety of Western settings demonstrate the importance of altruism [24], [25], [44]. Our group's study of Indian subjects found that a sense of altruism was a recurring theme as well [29].…”

“…Prior work has also examined factors associated with research participation in emerging-economy cultures such as Brazil and India. Such trials found that personal health benefits offered by the trial and a sense of altruism contributed to research participation, whereas there were a variety of barriers including mistrust of researchers, fear of side effects of the intervention, and inconvenience to the subject [24]–[28]. However, it is well accepted that motivations for research participation vary between patients of different cultural backgrounds [29]–[32].…”

Systematic review and metasummary of attitudes toward research in emergency medical conditions

“…This finding has been noted in numerous settings of research and across cultures 39 40. Many associate a sense of mistrust to past research misconduct 41.…”