Article info

Protocol
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

Authors

  • Cláudia de Freitas EPIUnit – Instituto de Saúde Pública, Universidade do Porto, Porto, PortugalCentre for Research and Studies in Sociology, University Institute of Lisbon (ISCTE-IUL), Lisboa, Portugal PubMed articlesGoogle scholar articles
  • Mariana Amorim EPIUnit – Instituto de Saúde Pública, Universidade do Porto, Porto, Portugal PubMed articlesGoogle scholar articles
  • Helena Machado Communication and Society Research Centre (CECS), Institute of Social Sciences, University of Minho, Braga, Portugal PubMed articlesGoogle scholar articles
  • Elisa Leão Teles Centro de Referência de Doenças Hereditárias do Metabolismo do Centro Hospitalar Universitário São João, Porto, Portugal PubMed articlesGoogle scholar articles
  • Maria João Baptista Centro de Referência de Cardiopatias Congénitas do Centro Hospitalar Universitário São João, Porto, PortugalDepartamento de Ginecologia, Obstetrícia e Pediatria, Faculdade de Medicina, Universidade do Porto, Porto, Portugal PubMed articlesGoogle scholar articles
  • Alicia Renedo Public Health Environments and Society, London School of Hygiene and Tropical Medicine, London, UK PubMed articlesGoogle scholar articles
  • Veerle Provoost Bioethics Institute Ghent, Department of Philosophy and Moral Sciences Ghent University, Ghent, Belgium PubMed articlesGoogle scholar articles
  • Susana Silva EPIUnit – Instituto de Saúde Pública, Universidade do Porto, Porto, PortugalDepartamento de Ciências da Saúde Pública e Forenses e Educação Médica, Faculdade de Medicina, Universidade do Porto, Porto, Portugal PubMed articlesGoogle scholar articles
  1. Correspondence to Dr Cláudia de Freitas; claudia.defreitas{at}ispup.up.pt
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Citation

de Freitas C, Amorim M, Machado H, et al
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

Publication history

  • Received August 31, 2020
  • Revised February 17, 2021
  • Accepted February 26, 2021
  • First published March 15, 2021.
Online issue publication 
March 15, 2021
  • Supplementary Data

    This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

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