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The Condition

The success of a Learning Health System depends on the clinical scenario in question. Previous studies have found that only a fraction of potential patients was deemed suitable for new technology because of the complexity of their condition, comorbidities or sociocultural situation. In reality, most patients are an exception to the general model.

The HealthTracker tool produced lifestyle recommendations suitable for patients with a structured lifestyle. However, those at risk of cardiovascular disease often had mental and physical comorbidities, as well as sociodemographic factors that made it difficult to comply with preventative lifestyle changes.

PatientsLikeMe began by covering one serious, fatal, and untreatable condition – ALS. Over time, it expanded to include a wide range of other conditions, starting with other neurological conditions like MS and Parkinson’s. It then broadened out into other chronic conditions, such as mood disorders, autoimmune and rheumatological diseases, as well as oncology and rare diseases. Patients with more serious conditions with fewer treatment options were more likely to engage in the platform continuously. For example, non-terminal chronic conditions like psoriasis had less uptake [191]. Patients waiting for an organ transplant were highly engaged while on the waiting list, but much less so once they had successfully undergone surgery [34].

CYPHP is a model of healthcare for children and young people, as well as a health system strengthening initiative. It therefore benefits patients and populations across multiple conditions. Guiding principles include anticipatory care, biopsychosocial care, and equity. Services are tailored to need using child-specific data gathered through a patient and parent portal, together with system-level administrative data and registries. CYPHP integrates care for children and young people across primary and secondary care, joining up mental and physical health and placing prevention and health promotion at the heart of the service.

TRANSFoRm initially focused on diagnosis in abdominal pain [116]. This is a well-defined field, but one that involves biopsychosocial complexities. The project later focused on colorectal cancer, which is more tightly defined [37].