JMIR Publications

ABSTRACT

Background:

Digital health technologies promise to democratise healthcare access yet often exacerbate existing inequalities when developed through traditional top-down approaches that prioritise technology implementation and exclude end-users from design processes. The COVID-19 pandemic accelerated digital transformation whilst simultaneously exposing how technology can both bridge and widen gaps in healthcare access. This study employed a large-scale participatory human-centred design (PHCD) methodology to co-create principles for equitable digital health transformation across Catalonia's healthcare ecosystem.

Objective:

To co-create actionable design principles for equitable digital health transformation through a large-scale participatory human-centred design process involving diverse stakeholders across Catalonia's healthcare ecosystem, with the aim of establishing guidelines for information systems that support a person-centred, integrated, and longitudinal care delivery model.

Methods:

We conducted a qualitative PHCD research study involving 265 participants representing diverse stakeholder groups: citizens and informal caregivers (n=106), healthcare professionals (n=83), healthcare managers and leaders (n=50), and cross-sectional experts in digital health innovation (n=26). Through two sequential rounds of participation between June 2024 and April 2025, we employed design thinking methodologies and co-creation tools in 24 sessions across the Catalan geography (north-east Spain) and 7 topic-specific expert sessions. Data collection utilised innovative visual tools including journey mapping, care model animations, future scenario storyboarding and facilitated ideation techniques. Analysis followed an inductive-deductive approach combining affinity mapping, thematic synthesis, and participant validation to transform stakeholder proposals into actionable design principles.

Results:

Participants identified critical barriers to digital health equity including digital literacy gaps for both citizens and professional staff, fragmented information systems, lack of user involvement in system design, and insufficient consideration of vulnerable populations' needs. The co-creation process yielded ten fundamental principles for equitable health information systems: (1) The Person and their Care Circle at the Centre, (2) Health for Everyone, Everywhere, (3) Tools for More Compassionate Care, (4) A Better Professional Experience, (5) An Active Role of the Population, (6) Personalised and Proactive Care, (7) Systematic Use of Data for Decision-making, (8) Integrated Quality Data Working for Health, (9) An Information System that Builds Trust, (10) Collaboration as a Driver of Innovation. These principles emerged from priority challenges that span technological, organisational, and socio-cultural dimensions of digital health transformation.

Conclusions:

This study demonstrates how participatory human-centred design can transform digital health development from a technology-driven to a people-driven process. Engaging diverse stakeholders as co-designers rather than mere consultants can uncover nuanced barriers and solutions that traditional approaches typically overlook as well as reveal a motivation for change that is crucial to drive such large-scale systemic transformation processes. This approach provides a comprehensive framework for developing health information systems that are not only technically robust but also genuinely responsive to people’s needs, locally relevant, culturally appropriate, and accessible to all.