Unresolved tensions in consumer engagement in CER: a US research perspective

Abstract

Efforts to engage patients and consumers in comparative effectiveness research (CER) in the USA are still in the early stages, and the outcomes of these partnerships have yet to be fully understood or realized. Our work assisting federal agencies and national organizations who engage patients and consumers in CER reveal three unresolved tensions around the representation of the patient experience in the research process, the culture of research and capacity to partner with patients and consumers, and the conflict between the methodological approaches to CER and the outcomes of interest to patients and caregivers. Several approaches to address these tensions have emerged, yet resolving these tensions will require addressing many system-level challenges and building an evidence base for consumer engagement in CER.