Public and patient involvement in health data governance (DATAGov): protocol of a people-centred, mixed-methods study on data use and sharing for rare diseases care and research

INTRODUCTION: International policy imperatives for the public and patient involvement in the governance of health data coexist with conflicting cross-border policies on data sharing. This can challenge the planning and implementation of participatory data governance in healthcare services locally. E...

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Autores principales: de Freitas, Cláudia, Amorim, Mariana, Machado, Helena, Leão Teles, Elisa, Baptista, Maria João, Renedo, Alicia, Provoost, Veerle, Silva, Susana
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2021
Materias:
Health Policy
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7959217/
https://www.ncbi.nlm.nih.gov/pubmed/33722870
http://dx.doi.org/10.1136/bmjopen-2020-044289

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