How patients and visitors to an urban emergency department view clinical research

Objectives: To assess views about clinical research, drawing current opinion from an urban, largely minority population within the authors' emergency department (ED). Methods: Two focus groups of ED patients and visitors were conducted. These data informed the development of a 27-item interview examining views about clinical research and knowledge of human subjects protections. Results: The authors interviewed a total of 172 patients and visitors within an adult ED. Study participants reflected the diverse patient population: 38% were African American, 32% Hispanic, 25% white, and 6% other. When asked why one might choose to participate in medical research, 46% said to benefit mankind, 26% said to improve one's own health, 18% cited access to medical care, 17% said financial incentive, and 11% said curiosity. When asked why one might decline research participation, 38% cited fear, 24% cited lack of interest in research, 10% cited medical mistrust, 9% indicated not wanting to feel like a "guinea pig," 6% indicated lack of time, and 5% suggested privacy concerns. When asked about the meaning of informed consent, 32% did not know. Many respondents (26%) were unaware that they could withdraw from a study. Although the majority (96%) endorsed a statement about the potential benefit of research for themselves or their loved ones, a sizable proportion of respondents (49%) equated research subjects to "human guinea pigs." Conclusions: Although many individuals tend to view clinical research favorably, a level of medical mistrust exists. The concerns about human experimentation and the limited understanding of human subject protections underscore the need to improve informed consent.