Consumer engagement is becoming a popular concept in healthcare, with organizations increasingly understanding the value in working closely with those they serve in order to improve their programs and outcomes.

But what are the experiences of the program staff and consumers who take part in consumer engagement activities? A joint project between staff at the Camden Coalition and complex care consumers taking part in the Camden Coalition’s National Consumer Scholars program sought to learn more about on-the-ground experiences of consumer engagement, and to extrapolate those experiences into recommendations for the complex care field.

The authors used an online survey to collect responses from complex care consumers and from staff/providers at complex care organizations. Survey responses elucidated the importance of understanding consumers’ intrinsic motivations for participation, setting clear expectations and roles for consumer participants, and always closing the loop by sharing back the outcome of consumers’ work and input. Responses also highlighted the need for organizations to address common barriers to consumer participation.

This research project in-and-of-itself is intended as a replicable model for how organizations can benefit from consumer partnerships. The findings described in the report provide insight and guidance for how complex care organizations — and others — can and should build authentic and mutually beneficial partnerships with their consumer stakeholders.