JMIR Publications

ABSTRACT

As digital health technologies become increasingly integrated into healthcare systems worldwide, there is growing recognition that their full potential can only be realized when development is rooted in patient engagement (PE). Despite its proven value in clinical research and healthcare delivery, PE remains insufficiently embedded in digital health design and implementation. This paper explores the current state of PE in digital health through findings from the Stakeholder Expectations Matrix (SEM) program developed by Patient Focused Medicines Development (PFMD). Drawing from 37 in-depth interviews across six key stakeholder groups, this research highlights differing perspectives on digital health, the barriers to meaningful engagement, and the fragmented nature of data governance and technology adoption. These findings are complemented by insights gathered during a multi-session co-creation track at the Patient Engagement Open Forum (PEOF), where participants further unpacked challenges and practical steps to strengthen PE in digital health. Together, the analysis points to significant gaps in shared understanding, infrastructure, and policy, but also to clear opportunities for collaboration. The paper outlines early recommendations for building a more inclusive and patient-centered digital health ecosystem, one that supports sustainable innovation, trust, and system-wide impact.