Using goal-directed design to create a novel system for improving chronic illness care

Area of Science:

• Health Services Research
• Human-Computer Interaction
• Pediatric Gastroenterology

Background:

• Learning health systems facilitate real-time collaboration among patients, clinicians, and researchers.
• They aim to improve healthcare quality, safety, and value by integrating evidence and discovery.
• This study focuses on applying these principles to pediatric chronic care.

Purpose of the Study:

• To describe the application of goal-directed design (GDD) methods in developing a prototype collaborative chronic care network (C3N).
• To understand the context and goals of participants in a learning health system for pediatric inflammatory bowel disease (IBD).
• To translate the learning health system concept into a functional prototype for chronic illness management.

Main Methods:

• Conducted 36 in-depth interviews and observations with patients, caregivers, physicians, and nurses.
• Utilized GDD methods to identify participant contexts and goals within a pediatric gastroenterology center.
• Employed idealized design techniques to define characteristics of the learning health system.

Main Results:

• Identified 3 parent-child dyad personas representing adaptation to chronic illness.
• Developed scenarios of potential interactions between personas and the C3N prototype.
• Derived system requirements from scenarios, guiding the development of approximately 100 prototype interventions.

Conclusions:

• GDD methods effectively integrate participant goals and contexts into the design of healthcare interventions for pediatric chronic illness.
• Designing interventions based on documented participant needs enhances the likelihood of achieving patient and family goals with dignity.
• GDD methods, combined with quality improvement, yielded prototypes aligned with clinical, research, and patient management objectives.