'Poking the skunk': Ethical and medico‐legal concerns in research about patients' experiences of medical injury.

Improving how health care providers respond to medical injury requires an understanding of patients' experiences. Although many injured patients strongly desire to be heard, research rarely involves them. Institutional review boards worry about harming participants by asking them to revisit traumati...

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Publicado en:Bioethics Vol. 33; no. 8; pp. 948 - 958
Autores principales: Schulz Moore, Jennifer, Mello, Michelle M., Bismark, Marie
Formato: Artículo
Publicado: Wiley-Blackwell Oct2019
Materias:
Acceso en línea:Ver este registro en EBSCOhost
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        atl: 'Poking the skunk': Ethical and medico‐legal concerns in research about patients' experiences of medical injury.
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        au:
          Schulz Moore, Jennifer
          Mello, Michelle M.
          Bismark, Marie
        affil:
          University of New South Wales Law School, Sydney New South Wales, Australia
          Stanford Law School and Department of Health Research and Policy, Stanford University, Stanford CA, USA
          Melbourne School of Population and Global Health, University of Melbourne, Melbourne Victoria, Australia
      su:
        New Zealand
        United States
        Emergency medical services
        Fear
        Medical research
        Patients
        Psychological stress
        Human research subjects
        Medical research laws
        Risk assessment
        Institutional review boards
        Psychology of Research personnel
      sug:
        subj:
          Emergency medical services
          Fear
          Medical research
          Patients
          Psychological stress
          Human research subjects
          New Zealand
          United States
          Emergency and Other Relief Services
          Municipal police services
          Research and Development in the Physical, Engineering, and Life Sciences (except Biotechnology)
          Medical research laws
          Risk assessment
          Institutional review boards
          Psychology of Research personnel
      keyword:
        ethics
        injury
        medical error
        patient research trauma
        ethics
        injury
        medical error
        patient research trauma
      ab: Improving how health care providers respond to medical injury requires an understanding of patients' experiences. Although many injured patients strongly desire to be heard, research rarely involves them. Institutional review boards worry about harming participants by asking them to revisit traumatic events, and hospital staff worry about provoking lawsuits. Institutions' reluctance to approve this type of research has slowed progress toward responses to injuries that are better able to meet patients' needs. In 2015–2016, we were able to surmount these challenges and interview 92 injured patients and families in the USA and New Zealand. This article explores whether the ethical and medico‐legal concerns are, in fact, well‐founded. Consistent with research about trauma‐research‐related distress, our participants' accounts indicate that the pervasive fears about retraumatization are unfounded. Our experience also suggests that because being heard is an important (but often unmet) need for injured patients, talking provides psychological benefits and may decrease rather than increase the impetus to sue. Our article makes recommendations to institutional review boards and researchers. The benefits to responsibly conducted research with injured patients outweigh the risks to participants and institutions.
      pubtype: Academic Journal
      doctype: Article
      src: R
    language: English
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