Background: A learning health system enables patients, clinicians, and researchers to work together to choose care based on the best evidence, drive discovery as a natural outgrowth of patient care, and ensure innovation, quality, safety, and value in health care; all in a more real-time fashion.
Objective: Our paper describes how goal-directed design (GDD) methods were employed to understand the context and goals of potential participants in such a system as part of a design process to translate the concept of a learning health system into a prototype collaborative chronic care network (C3N), specifically for pediatric inflammatory bowel disease.
Methods: Thirty-six one-on-one in-depth interviews and observations were conducted with patients (10/36, 28%), caregivers (10/36, 28%), physicians/researchers (10/36, 28%), and nurses (6/36, 17%) from a pediatric gastroenterology center participating in the ImproveCareNow network. GDD methods were used to determine the context and goals of participants. These same methods were used in conjunction with idealized design process techniques to help determine characteristics of a learning health system for this pediatric health care ecology. Research was conducted in a clinic and, in the case of some patients and caregivers, at home.
Results: Thematic analysis revealed 3 parent-child dyad personas (ie, representations of interviewees' behavior patterns, goals, skills, attitudes, and contextual information) that represented adaptation to a chronic illness over time. These were used as part of a design process to generate scenarios (potential interactions between personas and the learning health system under design) from which system requirements were derived. These scenarios in turn helped guide generation, prioritization, design, measurement, and implementation of approximately 100 prototype interventions consistent with the aim of C3N becoming a learning health network.
Conclusions: GDD methods help ensure human goals and contexts inform the design of a network of health care interventions which reflect the shape and purpose of a C3N in pediatric chronic illness care. Developing online and in-person interventions according to well-documented context and motivations of participants increases the likelihood that a C3N will enable all participants to act in ways that achieve their goals with grace and dignity. GDD methods complemented quality-improvement methods to generate prototypes consistent with clinical and research aims, as well as the goals of patient disease management.
Keywords: chronic illness care; goal-directed design; health system design; learning health care system; quality improvement, pediatrics.