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Missing Persons Alert: Finding the Lost "Person" in Patient-Oriented Research.

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  • 1University of Calgary, Calgary, Alberta, Canada.

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Summary

This study advances patient-oriented research by integrating participatory methodologies, aiming to overcome systemic barriers and foster equitable health research ecosystems. It emphasizes active partnerships between individuals, communities, and researchers for genuine collaboration.

Keywords:
healthcareparticipatory researchpatient-oriented researchresearch methodologysocial justice

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Area of Science:

  • Health Services Research
  • Community-Based Participatory Research
  • Health Equity

Background:

  • Patient-oriented research (POR) has been inconsistently implemented over the past decade, often perceived as tokenistic and facing systemic resistance.
  • Current health research systems perpetuate hierarchical structures and professional dominance, limiting genuine patient partnership.
  • Existing medical cosmologies often position patients as objects rather than active partners, hindering the full actualization of POR's mandate.

Purpose of the Study:

  • To advance the approach of patient-oriented research by making individuals and communities active partners in the health research process.
  • To address the systemic barriers and subtle injustices that impede the effective implementation of POR.
  • To explore the 'what' and 'how' of public involvement in health research through participatory methodologies.

Main Methods:

  • Conceptual advancement of patient-oriented research principles.
  • Integration of participatory research methodologies to enhance public involvement.
  • Analysis of systemic factors influencing the implementation of patient-oriented research.

Main Results:

  • Identified persistent systemic barriers and hierarchical structures that undermine patient engagement in health research.
  • Highlighted the need for increased awareness among researchers regarding subtle injustices within current research paradigms.
  • Proposed participatory methodologies as a means to deepen public involvement beyond tokenistic engagement.

Conclusions:

  • Achieving the mandate of patient-oriented research requires a fundamental shift towards genuine partnership and awareness of systemic inequities.
  • Integrating participatory research methodologies is crucial for transforming health research into a more just and equitable ecosystem.
  • This work lays the foundation for a transition towards a healthcare and research environment that actively involves and values individuals and communities.