Governing Participatory Health Data in Public Digital Infrastructure: Lessons from the Basque Country
Year: 2026
Type: article
Abstract: This article examines how participatory self-reporting changes when embedded in public digital health infrastructure, using the Basque Country’s Mi Diario as a case. It identifies tensions around responsibility, benefit distribution, and equitable participation, arguing that legitimate governance requires transparent data use, accountable benefit-sharing, inclusive participation pathways, and locally grounded evaluation of patients’ experiences and institutional effects within public healthcare systems.
Source: KITopen
Authors: Mahr, Dana, Weinbeger, Nora
Language: English
Subfield: General Health Professions
Field: Health Professions
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W7223235474