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

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. To explore and evaluate PPI in the development of a structured follow-up care model for patients with pulmonary embolism (PE). 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. 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. 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. When patients, healthcare professionals, and researchers work together, research and healthcare services are more likely to meet patients’ needs. In this study, we examined how patients could be involved in research about pulmonary embolism (PE). Until now, patients have rarely been included in this type of research. We explored patient engagement in a Danish research project aiming to co-produce a structured follow-up care model for patients with PE. Patient representatives were involved throughout the project, contributing to the definition of research questions, the design of the project, the co-production of the post-PE care model, and the dissemination of findings. One patient research partner was also part of the steering committee, influencing decision-making. Patients were involved in the research in different ways and at different stages. Sometimes their experiences were shared indirectly through information collected from patient journey mapping. Other times, they worked directly with researchers by taking part in workshops and through ongoing collaboration with a patient research partner (PRP). What helped their involvement was having a long-term partnership, making sure they were well prepared to take part, and offering different ways for them to contribute. However, there were also challenges. These included unclear expectations, meeting formats that were not always supportive, and the heavy use of medical language, which sometimes made it harder for patient representatives to contribute as equals. Despite these challenges, the benefits outweighed the barriers, and patient engagement proved to be highly valuable.