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Knowledge-based representation: Patient engagement in drug development.

Claudia Egher1, Olga Zvonareva2

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Patient representation in drug development is evolving, emphasizing knowledge-based representation. This involves drug development, autobiographical, and community knowledge for effective patient advocacy.

Keywords:
drug developmentknowledgeknowledge‐based representationparticipationpatient engagementrepresentation

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Area of Science:

  • Health Sciences
  • Social Sciences

Background:

  • Growing emphasis on patient involvement in drug development.
  • Need to understand the configuration of patient representation.

Purpose of the Study:

  • Investigate how patient representation is configured in drug development.
  • Identify the roles and expectations of patient representatives.

Main Methods:

  • Qualitative study using thematic analysis.
  • 40 semistructured interviews with stakeholders.
  • Analysis of patient engagement guides and forum observations.

Main Results:

  • Patient representation relies on drug development, autobiographical, and community knowledge.
  • A new model termed 'knowledge-based representation' is identified.
  • This model better describes how patients represent others.

Conclusions:

  • Knowledge-based representation highlights epistemic elements over political ones.
  • The democratic impact depends on resources and knowledge determination.
  • Political aspects of patient representation remain crucial.