“Am I OK?” using human centered design to empower rheumatoid arthritis patients through patient reported outcomes

Abstract Objective Use of patient reported outcomes (PROs) in the routine care of rheumatoid arthritis (RA) has been shown to improve health outcomes, However, integration of PROs into the clinical visit is inconsistent. We aimed to develop a “dashboard” for RA patients to display relevant PRO measures for discussion during a routine RA clinical visit. Methods Patients (N = 45) and providers (N = 12) were recruited from rheumatology clinics at a university center and a safety net hospital. Using a human-centered design process involving patients, clinicians, designers, and health-IT experts, we performed interviews, clinic observations, and focus groups, which subsequently guided an iterative phase of prototype testing. Results RA patients and their providers shared the goals of assessing wellbeing and developing a personalized treatment plan. We found conflicting views of which data were most important for guiding decision-making and for answering the patient’s overarching question of “Am I OK?” Conclusion The final dashboard simplified the display of PRO data and correlated it longitudinally to the patient’s medication regimen. It also included laboratory values relevant for RA care. Practice implications By presenting data graphically, the dashboard may provide a platform for patients and providers to communicate around PROs and shared goals.