Patient and family member-led research is a novel research approach that is feasible to conduct and can be used to identify opportunities for improving care.

Study participants described shared key experiences in the patient and family “ICU journey” related to admission to ICU, daily care in the ICU and the post-ICU experience.

Five suggestions for improving the patient and family experience were proposed.

Patient and family member-led research provides a novel approach for engaging patients and family members and could serve as a valuable extension of conventional health services research approaches.

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