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Definir las tareas de participación y compromiso de los pacientes y del público en la investigación de datos de

Hayley G Evans1, Olivia C Robinson2, Linda von Nerée1

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Resumen

Es crucial desarrollar una guía procesable para la participación y el compromiso de los pacientes y del público (PPIE) en la investigación de datos de salud. Este estudio ofrece un marco de 29 tareas específicas para garantizar un PPIE significativo a lo largo de todo el ciclo de investigación.

Palabras clave:
El PPIE es el PPIE.Metodología de la metodología de consenso.la transparencia de los datos, la transparencia de los datos.datos de salud investigación de datos de saludla participación del paciente.El compromiso público es el compromiso público.

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Área de la Ciencia:

  • Salud Datos de investigación de la investigación de la salud.
  • Participación y compromiso de los pacientes y el público (PPIE)

Sus antecedentes:

  • La participación y compromiso de los pacientes y el público (PPIE) es vital en la investigación, pero requiere enfoques personalizados para los estudios de datos de salud.
  • La investigación de datos de salud se enfrenta a desafíos únicos en transparencia y seguridad, lo que requiere definiciones específicas de tareas de PPIE para evitar el tokenismo.

Objetivo del estudio:

  • Desarrollar una guía procesable y centrada en la tarea para PPIE específicamente en el contexto de la investigación de datos de salud.
  • Crear un marco integral que aborde el PPIE en todas las etapas del ciclo de investigación de datos de salud.

Principales métodos:

  • Se empleó un proceso de desarrollo de consenso, que involucró la revisión de la literatura y el aporte de expertos para generar posibles tareas de PPIE.
  • Un panel de consenso de nueve miembros, incluidos participantes de PPIE, profesionales e investigadores de la salud, calificó y discutió las tareas para lograr un acuerdo.
  • Las tareas se refinaron a través de calificaciones en línea y discusiones en persona, con puntuaciones medianas calculadas para finalizar la lista de tareas.

Principales resultados:

  • Se identificaron veintinueve tareas distintas del PPIE en seis dominios de investigación: priorizar, planificar, entregar, interpretar, compartir y evaluar la investigación.
  • Se logró consenso sobre 25 tareas en la ronda inicial, con discusiones posteriores para resolver desacuerdos, particularmente en lo que respecta a la planificación del proyecto y la privacidad de los datos.
  • Se obtuvo pleno consenso y apoyo para las 29 tareas identificadas después de la segunda ronda de evaluación.

Conclusiones:

  • Los participantes del PPIE demostraron un fuerte compromiso con la participación en todas las fases de la investigación.
  • El estudio proporciona un marco validado de tareas PPIE procesables para la investigación de datos de salud, fomentando un mayor refinamiento y evaluación.