Artigo em revista científica Q1
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
Claudia de Freitas (Freitas, C.); Mariana Amorim (Amorim, M.); Helena Cristina Ferreira Machado (Machado, H.); Elisa Leão Teles (Teles, E. L.); Maria João Baptista (Baptista, M. J.); Alicia Renedo (Renedo, A.); Veerle Provoost (Provoost, V.); Susana Manuela Ribeiro Dias da Silva (Silva, S.); et al.
Título Revista
BMJ Open
Reino Unido
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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. Engaging with local stakeholders and understanding how their needs, values and preferences for governing health data can be articulated with policies made at the supranational level is crucial. This paper describes a protocol for a project that aims to coproduce a people-centred model for involving patients and the public in decision-making processes about the use and sharing of health data for rare diseases care and research. Methods and analysis This multidisciplinary project draws on an explanatory sequential mixed-methods study. A hospital-based survey with patients, informal carers, health professionals and technical staff recruited at two reference centres for rare diseases in Portugal will be conducted first. The qualitative study will follow consisting of semi-structured interviews and scenario-based workshops with a subsample of the participant groups recruited at baseline. Quantitative data will be analysed using descriptive and inferential statistics. Inductive and deductive approaches will be combined to analyse the qualitative interviews. Data from scenario-based workshops will be iteratively compared using the constant comparison method to identify cross-cutting themes and categories. Ethics and dissemination The Ethics Committee for Health from the University Hospital Centre São João/Faculty of Medicine of University of Porto approved the study protocol (Ref. 99/19). Research findings will be disseminated at academic conferences and science promotion events, and through public meetings involving patient representatives, practitioners, policy-makers and students, a project website and peer-reviewed journal publications.
Health policy,Information management,Ethics (see medical ethics)
  • Medicina Clínica - Ciências Médicas
  • Outras Ciências Médicas - Ciências Médicas
Registos de financiamentos
Referência de financiamento Entidade Financiadora
POCI-01-0145-FEDER-032194 Fundação para a Ciência e a Tecnologia
IF/01674/2015 Fundação para a Ciência e a Tecnologia
DL57/2016/CP1336/CT0001 Fundação para a Ciência e a Tecnologia
UIDB/04750/2020 Fundação para a Ciência e a Tecnologia
PTDC/SOC-SOC/32194/2017 Fundação para a Ciência e a Tecnologia