Integrating patient voices in digital health research design: The ProPacient Decalogue.

Abstract

To integrate patient perspectives into the design of digital health research through a participatory process and to develop a set of guiding principles for inclusive, ethical, and patient-centered digital research. The Catalonia Patient Advisory Council (CCPC) coordinated a co-creation process involving 70 individuals representing ten diverse health conditions. Five sessions-four in person and one online-were conducted using design thinking and visual methodologies to facilitate inclusive dialogue. Participants identified needs and preferences related to digital health participation, which were synthesized into the ProPacient Decalogue. The participatory process revealed key factors that support meaningful patient engagement, including early involvement, trust-building, adaptive formats, and recognition of lived experience. Participants highlighted the importance of clear communication, digital accessibility, and inclusive design. The resulting ProPacient Decalogue provides ten actionable principles to guide future digital health research. Patient involvement enhances the quality, relevance, and equity of digital health research. The ProPacient approach offers a replicable model for integrating patient voices and fostering participatory research. Researchers and policymakers can use the ProPacient Decalogue to improve patient engagement across all phases of digital health research. Applying its principles may reduce the digital divide, strengthen user-centered innovation, and increase trust in digital health interventions.