Enhancing the adoption of patient engagement in critical care research: Insights from a qualitative study.

BACKGROUND: In the rapidly evolving healthcare delivery, patient engagement in clinical research is emerging as a prerequisite for developing patient-centred care models, implementing value-based care, and creating metrics to enhance learning healthcare systems. In a high-acuity setting like critical care, this practice represents a paradigm shift from medical paternalism and the traditional disease-centred approach. It acknowledges the experiences and expertise of patients and families in the research cycle and clinical practice. However, patient engagement is a relatively new practice in critical care research with limited evidence.

OBJECTIVES: Our aim was to share insights and strategies from our qualitative study on women's experiences of critical care to advance the science of patient engagement adoption in critical care research.

METHODS: We collaborated with five patient partners, including two former intensive care unit patients and three informal caregivers, to design and conduct a qualitative study exploring the psychological distress experienced by women in critical care. Our engagement approach was guided by the Canadian Institute of Health Research principles: mutual respect, inclusivity, a supportive environment, and coproduction. Patient partners' input was facilitated through scheduled consultations, email correspondence, and flexible participation options. A designated research coordinator managed the process, ensuring meeting materials were shared in advance and notes were documented. We utilised the Saskatchewan Centre for Patient-Oriented Research level of engagement tool to tailor activities across project stages. Patient partners played important, self-determined roles such as assisting in proposal refinement, ensuring the cultural and linguistic relevance of research materials, coproducing data collection material, and developing engagement tools (such as terms of reference). They also copresented our engagement strategy at a conference. A trauma-informed approach was used to prevent retraumatisation. Patient partners received compensation and were offered opportunities for study dissemination.

FINDINGS: Patient partners possess valuable resources and insights that can enrich the research process. Emerging themes include the importance of defining expectations, relationship building, engagement as a cyclical process, and working with a diversity of perspectives.

CONCLUSION: Through ongoing revision, our patient engagement strategies and lessons learned would be invaluable for researchers seeking to adopt patient engagement in critical care research.

REGISTRATION: This project was not registered.