K E A Burns1, N Magyarody, D Jiang, R Wald. 1. Interdepartmental Division of Critical Care Medicine, University of Toronto, Toronto, Ontario, Canada. burnsk@smh.toronto.on.ca
Abstract
BACKGROUND: While the challenges of recruitment into clinical trials are well described, little is known about the public's perceptions towards research. AIMS: We sought to describe the attitudes, beliefs and knowledge of the public towards research and research participation, focusing on clinical trials, contrast these attributes among individuals with different relationships with the healthcare system and to identify predictors of willingness to participate. METHODS: We conducted a self-administered cross-sectional survey of patients and their significant others in two clinics and two intensive care unit waiting rooms and in three public venues. RESULTS: We analysed responses from 417 respondents (102 and 105 in dialysis and oncology clinics, and 106 in intensive care unit (ICU) waiting rooms, 104 in public locations). While most (68.3%) respondents favoured the use of humans in clinical trials, 53% felt that trial participants always or almost always receive the best quality of care, only 30.4% had participated in clinical research. Approximately 70% felt that subjects are always advised of the risks and benefits of participation, and 30% expressed ambiguity regarding whether participants are informed of their involvement. Oncology and dialysis respondents were the most and least informed regarding research methods and ethics. The perceived risks and benefits associated with clinical circumstances influence research participation decisions and vary with healthcare experiences. We identified six predictors of willingness to participate. CONCLUSION: Attitudes of the public towards research participation are beleaguered by misconceptions. Stakeholders in clinical research must educate the general public regarding research methods and ethics.
BACKGROUND: While the challenges of recruitment into clinical trials are well described, little is known about the public's perceptions towards research. AIMS: We sought to describe the attitudes, beliefs and knowledge of the public towards research and research participation, focusing on clinical trials, contrast these attributes among individuals with different relationships with the healthcare system and to identify predictors of willingness to participate. METHODS: We conducted a self-administered cross-sectional survey of patients and their significant others in two clinics and two intensive care unit waiting rooms and in three public venues. RESULTS: We analysed responses from 417 respondents (102 and 105 in dialysis and oncology clinics, and 106 in intensive care unit (ICU) waiting rooms, 104 in public locations). While most (68.3%) respondents favoured the use of humans in clinical trials, 53% felt that trial participants always or almost always receive the best quality of care, only 30.4% had participated in clinical research. Approximately 70% felt that subjects are always advised of the risks and benefits of participation, and 30% expressed ambiguity regarding whether participants are informed of their involvement. Oncology and dialysis respondents were the most and least informed regarding research methods and ethics. The perceived risks and benefits associated with clinical circumstances influence research participation decisions and vary with healthcare experiences. We identified six predictors of willingness to participate. CONCLUSION: Attitudes of the public towards research participation are beleaguered by misconceptions. Stakeholders in clinical research must educate the general public regarding research methods and ethics.
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