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

Abstract

To assess views about clinical research, drawing current opinion from an urban, largely minority population within the authors' emergency department (ED). 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. 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." 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.