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Background <p>Collaboration between patients, healthcare professionals (HCPs), and researchers is essential to ensure that research and healthcare services meet end-users’ needs. However, patient and public involvement (PPI) in venous thromboembolism research remains limited.</p> Purpose <p>To explore and evaluate PPI in the development of a structured follow-up care model for patients with pulmonary embolism (PE).</p> Method <p>A prospective embedded case study was conducted within a Danish PE research project. Data was collected through observations, semi-structured interviews with patient representatives, HCPs, and researchers, and from written and visual materials. Analysis was guided by the UK standards for public involvement.</p> Result <p>Patients contributed at multiple levels across the research stages, from indirect representation through experience-based data generated via patient journey mapping to active co-production in workshops and sustained collaboration with a patient research partner (PRP). Key facilitators included sustained partnership, preparation for participation, and multiple modes of involvement. Identified barriers related to insufficient alignment of expectations, structural constraints in meeting formats, and the dominance of clinical language, which at times limited patient representatives’ ability to contribute on equal terms. Observational data confirmed that patient contributions were incorporated into the final model, particularly regarding psychosocial recovery, validation of persistent symptoms, and the development of patient-facing materials.</p> Conclusion <p>PPI contributed substantively to the development of a structured post-PE care model aligned with patients’ needs and preferences. Early role clarification, sustained involvement across research stages, and attention to communication practices were central to facilitating meaningful PPI in the research process.</p>

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Patient and public involvement in pulmonary embolism research: insights from the development of a pulmonary embolism follow-up care model

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年3月25日

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  • Stine Foged Lindegaard,
  • Nanna Rolving,
  • Tina Jensen,
  • Lotte Ørneborg Rodkjaer,
  • Jeanette Finderup,
  • Anette Arbjerg Højen

摘要

Background

Collaboration between patients, healthcare professionals (HCPs), and researchers is essential to ensure that research and healthcare services meet end-users’ needs. However, patient and public involvement (PPI) in venous thromboembolism research remains limited.

Purpose

To explore and evaluate PPI in the development of a structured follow-up care model for patients with pulmonary embolism (PE).

Method

A prospective embedded case study was conducted within a Danish PE research project. Data was collected through observations, semi-structured interviews with patient representatives, HCPs, and researchers, and from written and visual materials. Analysis was guided by the UK standards for public involvement.

Result

Patients contributed at multiple levels across the research stages, from indirect representation through experience-based data generated via patient journey mapping to active co-production in workshops and sustained collaboration with a patient research partner (PRP). Key facilitators included sustained partnership, preparation for participation, and multiple modes of involvement. Identified barriers related to insufficient alignment of expectations, structural constraints in meeting formats, and the dominance of clinical language, which at times limited patient representatives’ ability to contribute on equal terms. Observational data confirmed that patient contributions were incorporated into the final model, particularly regarding psychosocial recovery, validation of persistent symptoms, and the development of patient-facing materials.

Conclusion

PPI contributed substantively to the development of a structured post-PE care model aligned with patients’ needs and preferences. Early role clarification, sustained involvement across research stages, and attention to communication practices were central to facilitating meaningful PPI in the research process.