A Comparative Study of Patients’ Attitudes Toward Clinical Research in the United States and Urban and Rural China

Abstract

As the number of clinical trials conducted in China increases, understanding Chinese attitudes toward clinical research is critical for designing effective and ethical studies. Two survey studies were conducted in 2012 and 2013 to compare patient attitudes toward clinical research and factors affecting research participation in the United States and urban and rural China. We surveyed 525 patients in 2012 (186 US, 186 urban, 153 rural China) and 690 patients in 2013 (412 US, 206 urban, 72 rural China). US patients were more likely to have no concerns regarding research participation than Chinese patients. Most common concerns of US patients were safety, privacy and confidentiality, and time required. Safety was a top concern for many Chinese. Chinese patients, particularly rural Chinese, were more concerned about the likelihood of self-benefit, and receiving free medical care and financial incentive had greater influence on their participation. Being informed of the freedom to choose whether to participate or to leave a study was less important to Chinese patients. Our study provides important insights into Chinese patients' attitudes toward clinical research and the need to educate them about their rights. These findings help in designing cross-cultural clinical studies that maximize enrollment while upholding Western ethical standards. Clin Trans Sci 2015; Volume 8: 123-131

The willingness to participate in biomedical research involving human beings in low‐ and middle‐income countries: a systematic review

“…Confidentiality concerns were mentioned 12 times , ranked in the top three, four times , and ranked first, three times . Confidentiality concerns were ranked highest by research participants in North Africa and the Middle East (second), even though it was ranked fifth overall.…”

“…Inconvenience was mentioned in 25 articles as a reason for non‐participation , ranked as the top three reasons fourteen times , and ranked first in four articles . Examples of inconveniences included not having enough time to participate in research, transport issues or a long distance to the research site .…”

“…This was a particular issue for vaccine or drug trials, but not for observational studies. Safety concerns were mentioned in 45 papers [1, 20-23, 26, 28, 30-32, 34, 36, 37, 39-42, 45, 47, 48, 50-53, 55, 56, 58, 59, 61, 62, 67-69, 71, 76, 77, 88, 92-99], ranked in the top three reasons 32 times [1, 20, 21, 23, 30-32, 36, 37, 40, 41, 45, 47, 48, 50-53, 55, 56, 58, 61, 65, 67-69, 71, 77, 93, 94, 96-98], and identified as the top reason for non-participation 16 times [31,32,40,45,47,48,55,58,61,65,68,71,77,93,94,96,98]. Safety concerns were consistently ranked as most important in all categories, with the exception of North Africa and the Middle East, where they ranked second.…”

“…Distrust was mentioned in 14 articles [21,34,37,39,41,42,45,53,55,56,58,62,83], and given as a top three reason four times [41,56,58,61]. Distrust was an important factor mostly in Eastern Europe, and was ranked as the eighth most important reason overall.…”

“…Additional reasons given for non-participation were costs [44,58,69,103,111], cultural insensitivity [37,101], fear of false-positive test results after participation in HIV research [36,44,45,50,59,86,93,94], fear of knowledge of health status [19,28,30,54,68], insufficient compensation [21,43], invasive procedures, [1,20,30,39,54,78,87,106] lack of interest [30,34,37,61,86,95,102,104,105,109], lack of clarity [1,30,37,51,52,91,111], not willing to comply to terms of research [55,68,…”