Clinicians and patients want treatments tailored specifically to individual characteristics: Clinicians conduct trials of therapy when they start a drug in a patient and judge the clinical response; and Patients also try dietary modifications or complementary therapies, particularly in chronic illness. In both cases, it is difficult to determine if treatments and life-style changes are truly beneficial because these types of informal trials are methodologically inadequate to provide the evidenced needed to tailor an individual’s chronic disease management. We have developed a system—the Personalized Learning System—that is designed to improve current care delivery processes by helping clinicians and patients collaborate in a formal way to more rigorously identify what works best to improve patient outcomes.
The Personalized Learning System makes it easier for patients to track daily symptoms, and for patients and clinicians to gain a better understanding of the patient’s health status, eliminate factors that are causing unwanted variation in symptoms, and take advantage of learning from natural experiments that occur in everyday life. It also helps patients and clinicians design and execute formal N-of-1 experiments, where treatment is systematically varied across a series of time periods in order to more confidently identify strategies that improve symptoms. Through all of these activities, the Personalized Learning System improves the current model of decision-making in clinical care and helps patients answer the question, “What can I do to improve the outcomes that are most important to me?”
The C3N Platform is a multi-user (patient/family, clinician, and researcher) web-based platform for facilitating clinician-to-patient collaboration, patient-to-patient communication, identification of the most appropriate treatments for an individual, and improving outcomes for patients with pediatric IBD. The C3N Platform will allow patients to enter data on their health status, clinicians and patients to co-design and carry out individual N-of-1 studies, and patients and providers to share data and experiences with one another.