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Freitas, C., Silva, S., Maia, T. & Amorim, M. (2019). Public participation in health data governance: A scoping review. In Yves Charpak, Denis Zmirou-Navier, Dineke Zeegers Paget (Ed.), European Journal of Public Health. (pp. 238-239). Marseille: Oxford University Press (OUP).
C. S. Freitas et al., "Public participation in health data governance: A scoping review", in European Journal of Public Health, Yves Charpak, Denis Zmirou-Navier, Dineke Zeegers Paget, Ed., Marseille, Oxford University Press (OUP), 2019, vol. 29, pp. 238-239
@inproceedings{freitas2019_1765914507830,
author = "Freitas, C. and Silva, S. and Maia, T. and Amorim, M.",
title = "Public participation in health data governance: A scoping review",
booktitle = "European Journal of Public Health",
year = "2019",
editor = "Yves Charpak, Denis Zmirou-Navier, Dineke Zeegers Paget",
volume = "29",
number = "",
series = "",
doi = "10.1093/eurpub/ckz185.647",
pages = "238-239",
publisher = "Oxford University Press (OUP)",
address = "Marseille",
organization = "",
url = "https://academic.oup.com/eurpub/article/29/Supplement_4/ckz185.647/5624891"
}
TY - CPAPER TI - Public participation in health data governance: A scoping review T2 - European Journal of Public Health VL - 29 AU - Freitas, C. AU - Silva, S. AU - Maia, T. AU - Amorim, M. PY - 2019 SP - 238-239 SN - 1101-1262 DO - 10.1093/eurpub/ckz185.647 CY - Marseille UR - https://academic.oup.com/eurpub/article/29/Supplement_4/ckz185.647/5624891 AB - The sheer growth of the health data shared and traded globally holds great promise and menace to public health. Big health data can foster scientific advancements with potential to heal millions across the globe. However, inerasable digital footprints left by the use of apps and digital services challenge people’s privacy and autonomy in (un)foreseeable ways that may cause them to stop sharing data. While many argue that public participation in data governance is a right, others view it as a means to increase data subjects’ recruitment and amass large quantities of data. Little systematic knowledge exists, however, about the arguments for and impact of public participation on health data policy and management. ER -
English