PUBLICATIONS
2022
Amorim M, Silva S, Machado H, Teles EL, Baptista MJ, Maia T, Nwebonyi N, De Freitas C (2022) Benefits and risks of sharing genomic data for research: comparing the views of rare disease patients, informal carers and healthcare professionals. International Journal of Environmental Research and Public Health, 19.
Nwebonyi N, Silva S, De Freitas C (2022) Public views about involvement in decision-making on health data sharing, access, use and reuse: the importance of trust in science and other institutions. Frontiers in Public Health (2022): 10:852971.
Nwebonyi N, Silva S, De Freitas C (2022) Getting involved in decisions about health data sharing, access, use and reuse? The views of rare disease patients. The 5th Global Public Health Conference. Book of Abstracts of the 5th Global Public Health Conference 2022.
2021
De Freitas C, Silva S, Machado H, Baptista MJ, Leão Teles E, Maia T, Amorim M. (2021) Support for decision-making on sharing health data for research: are data counsellors relevant? European Journal of Public Health 31 (suppl_3): ckab165.166.
De Freitas C, Amorim M, Machado H, Leão Teles E, Baptista MJ, Renedo A, Provoost V, Silva S. (2021) 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. BMJ Open, 11:e044289
De Freitas C, Silva S, Amorim M (2021) Public and patient involvement in the digitalization of healthcare. IV ISA Forum of Sociology: Challenges of the 21st Century. Book of Abstracts. February 23-27. Porto Alegre, Brazil.
2020
De Freitas C, Amorim M, Leão Teles E, Maia T, Machado H, Silva S (2020), Public preferences for involvement in the governance of health data, European Journal of Public Health 30 (suppl_5): ckaa165.801.
De Freitas C, Silva S, Leão Teles E, Maia T, Amorim M (2020), Participation in data generation and information sharing: are patients and carers willing to engage?, European Journal of Public Health 30 (suppl_5): ckaa165.370.
Amorim M, Silva S, Maia T, De Freitas C (2020), Benefits and risks of sharing genetic data for research purposes: the views of patients and carers, European Journal of Public Health 30 (suppl_5): ckaa165.365.
2019
De Freitas C, Silva S, Maia T, Amorim M (2019), Public participation in health data governance: a scoping review. European Journal of Public Health 29 (suppl_4): ckz185.647.
Maia T, Silva S, De Freitas C (2019), Solidarity and reciprocity in data governance: information sharing among gamete donors and recipients. European Journal of Public Health 29 (suppl_4): ckz185.648.