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Defining Patient and Public Involvement and Engagement Tasks in Health Data Research: A Consensus Study.

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Summary
This summary is machine-generated.

Developing actionable guidance for patient and public involvement and engagement (PPIE) in health data research is crucial. This study offers a framework of 29 specific tasks to ensure meaningful PPIE across the entire research cycle.

Keywords:
PPIEconsensus methodologydata transparencyhealth data researchpatient involvementpublic engagement

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Area of Science:

  • Health Data Research
  • Patient and Public Involvement and Engagement (PPIE)

Background:

  • Patient and Public Involvement and Engagement (PPIE) is vital in research but requires tailored approaches for health data studies.
  • Health data research faces unique challenges in transparency and security, necessitating specific PPIE task definitions to avoid tokenism.

Purpose of the Study:

  • To develop actionable, task-focused guidance for PPIE specifically within the context of health data research.
  • To create a comprehensive framework that addresses PPIE throughout all stages of the health data research cycle.

Main Methods:

  • A consensus development process was employed, involving literature review and expert input to generate potential PPIE tasks.
  • A nine-member consensus panel, including PPIE participants, professionals, and health researchers, rated and discussed tasks to achieve agreement.
  • Tasks were refined through online ratings and in-person discussions, with median scores calculated to finalize the task list.

Main Results:

  • Twenty-nine distinct PPIE tasks were identified across six research domains: prioritizing, planning, delivering, interpreting, sharing, and evaluating research.
  • Consensus on 25 tasks was achieved in the initial round, with subsequent discussions resolving disagreements, particularly concerning project planning and data privacy.
  • Full consensus and support for all 29 identified tasks were obtained after the second round of evaluation.

Conclusions:

  • PPIE participants demonstrated a strong commitment to involvement across all research phases.
  • The study provides a validated framework of actionable PPIE tasks for health data research, encouraging further refinement and evaluation.