Co-Developing Strategies for Patient Engagement in Decentralized Rheumatic Heart Disease Care: Lessons from Northern Uganda

Rheumatic heart disease (RHD) requires long-term secondary antibiotic prophylaxis to prevent disease progression, yet sustained patient engagement remains challenging in many low- and middle-income countries. Within Uganda’s first integrated decentralized RHD control program, Accelerating Delivery of Rheumatic Heart Disease Preventive Services in Uganda (ADUNU), we applied a human-centered design (HCD) approach to co-develop strategies for improving engagement in care. Using two Group Level Assessment sessions (with n = 43 stakeholders) and three design focus group discussions (n = 23 stakeholders), participants identified and prioritized feasible implementation strategies. Strategies were synthesized into four domains: community integrated follow-up, structured patient health education and counselling, provider capacity and service delivery improvement, and strengthening stock planning for medicine availability. These co-developed strategies directly address barriers related to missed appointments, limited understanding of RHD, provider-patient interactions, and medicine stockouts within decentralized primary care settings. This participatory approach generated contextually grounded strategies, ready for prospective testing within decentralized RHD programs.