The autoimmune disease scleroderma — which involves hardening of the skin — can affect multiple organs, from the heart to the lungs to the gastrointestinal tract and more. Rheumatologists who treat patients with the condition have to factor in multiple test results and characteristics to determine the best treatment decisions. But a new precision medicine program in use at Johns Hopkins has the power to help.
Patient Insight is a visualization app now available within the Epic electronic medical record. The tool synthesizes information from a patient’s current and previous test results, along with characteristics such as patient age, sex and type of scleroderma, to illustrate their course of disease. With a database of information from over 4,000 people with scleroderma seen at Johns Hopkins, Patient Insight provides graphs that show how patients are doing compared to their previous visits. More recently, new capabilities were added, so rheumatologists also can see how patients fare compared with other patients with similar characteristics.
“Our goal is not just to show where a patient has been but to improve predictions of where a patient is going,” says Ami Shah, M.D., M.H.S., director of the Division of Rheumatology and co-director of the Scleroderma Center. If rheumatologists can detect early signals of disease progression, they can intervene earlier and potentially alter the course of illness, she says. “We’re trying to develop a continuous learning health system where you learn from the patient and the population of patients to help the person who’s right in front of you.”
Now, with funding from the National Institutes of Health, Shah’s team is investigating the value of embedding personalized predictive analytics in the tool to aid medical decision-making. They also are externally validating their statistical models and findings so the tool could be shared with other medical centers.
More information on scleroderma treatment and the Scleroderma Center.