How Patients and Visitors to an Urban Emergency Department View Clinical Research

Authors

  • Ilene Wilets PhD,

    Corresponding author
    1. Department of Emergency Medicine, Mount Sinai School of Medicine, New York, NY.
      Department of Emergency Medicine, The Mount Sinai School of Medicine, Box #1620, One Gustave L. Levy Place, New York, NY 10029. Fax: 212-426-1946; e-mail: ilene.wilets@mssm.edu.
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  • Maria O'Rourke MD,

    1. Department of Emergency Medicine, Mount Sinai School of Medicine, New York, NY.
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  • Denise Nassisi MD

    1. Department of Emergency Medicine, Mount Sinai School of Medicine, New York, NY.
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Department of Emergency Medicine, The Mount Sinai School of Medicine, Box #1620, One Gustave L. Levy Place, New York, NY 10029. Fax: 212-426-1946; e-mail: ilene.wilets@mssm.edu.

Abstract

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.

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