The CFHealthHub Learning Health System: Using Real-Time Adherence Data to Support a Community of Practice to Deliver Continuous Improvement in an Archetypal Long-Term Condition

Abstract

CFHealthHub is a learning health system active in over 50% of adult CF Centres in England, supporting people with CF to develop habits of self-care around adherence to preventative inhaled therapy. This is achieved through the delivery of a behaviour change intervention, alongside collection of objective adherence data. As is common to long-term conditions, adherence to prescribed therapy is low, despite clear evidence of beneficial long-term impact on outcomes. This article explains how CFHealthHub is underpinned by coherent conceptual frameworks. We discuss how application of implementation and quality improvement strategies has facilitated CFHealthHub’s progression from a pilot study to a large, randomised control trial and now to a learning health system, becoming embedded within routine care. CFHealthHub is now able to support real-time health technology assessments, quality improvement and research trials and is in the process of being implemented in routine clinical care across participating centres.