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Improving informed consent: Stakeholder views.

Emily E Anderson1, Susan B Newman2, Alicia K Matthews3

  • 1a Neiswanger Institute for Bioethics, Stritch School of Medicine, Loyola University Chicago.

AJOB Empirical Bioethics
|September 27, 2017
PubMed
Summary
This summary is machine-generated.

Improving research informed consent requires stakeholder input. A multimedia app could help, but technology cannot replace essential human interaction in the informed consent process.

Keywords:
focus groupsinformed consentstakeholder engagementtechnology

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Area of Science:

  • Clinical Research
  • Health Informatics
  • Bioethics

Background:

  • The informed consent process is crucial for ethical research.
  • Current paper-based consent forms often fail to meet objectives.
  • Innovation is needed to enhance participant understanding and engagement.

Purpose of the Study:

  • To gather stakeholder perspectives on improving the informed consent process.
  • To explore the potential of a multimedia informed consent application.
  • To inform the development of technology-assisted consent tools.

Main Methods:

  • A mixed-methods descriptive study.
  • Five focus groups conducted with research participants and researchers (n=41).
  • Surveys assessed background, knowledge, and attitudes toward technology in research.

Main Results:

  • Former research participants generally had positive experiences but noted consent process shortcomings.
  • Key themes included consent form content, the consent experience, and technology's potential.
  • Researchers highlighted the need for lay input in consent form development.

Conclusions:

  • Interactive technology shows promise for improving informed consent.
  • Human connection remains central and irreplaceable in the informed consent process.
  • Further research is needed to ensure multimedia consent avoids pitfalls of paper-based methods.