Evaluating Meaningful Patient and Public Involvement in Intensive Care Research-A PEIRS-22 Survey

Patient and public involvement (PPI) is increasingly recommended in health research to enhance relevance, quality and implementation of findings. In intensive care research, involving patients, family members and healthcare professionals may help ensure that research addresses outcomes that are meaningful to those affected by critical illness.

This study aimed to assess the level of meaningful PPI engagement during the development of a core outcome set (COS) for general intensive care unit (ICU) patients in Denmark.

A cross-sectional survey using the Danish version of the Patient Engagement in Research Scale (PEIRS-22) was conducted between December 2024 and January 2025. We invited all members (patients, family, healthcare professionals and researchers) of five research panels, established in 2021 to support COS development across Danish university hospitals (N = 46). PEIRS-22 total scores range from 1 to 100, with higher scores indicating greater meaningful engagement (scores ≥ 70.1 were considered meaningful). Descriptive statistics, item-level analyses and non-parametric comparisons between participant roles were performed.

Thirty-seven of 46 participants responded (80.4%): 27.0% (n = 10) were patients/family, 46.0% (n = 17) healthcare professionals and 27.0% (n = 10) researchers. The median PEIRS-22 total score was 78 (IQR 68-93), with 72.0% (n = 27) scoring ≥ 70.1. Engagement differed statistically significant by role (p = 0.004), with researchers reporting the highest scores (median 97), followed by patients/family (89), while healthcare professionals reported lower scores (74).

PPI in COS development for general ICU patients was perceived as meaningful overall. However, differences across stakeholder groups and lower achievement of advanced engagement elements suggest opportunities to strengthen shared decision-making, role clarity and perceived relevance, particularly among healthcare professionals. Meaningful involvement of patients, families and clinicians may support the development of more patient-centred intensive care research and outcomes that better reflect the priorities of those affected by critical illness.

Meaningful PPI can help ensure that intensive care research reflects the priorities of patients and families. Clear roles, clinical relevance, and opportunities to influence decisions may strengthen engagement, particularly among healthcare professionals. Critical care nurses may play an important role in facilitating collaboration between patients, families, clinicians, and researchers.