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Qualitative study to assess citizens’ perception of sharing health data for secondary use and recommendations on how to engage citizens in the EHDS

Quality of healthcare  
[1]
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Public Access

Published

Sci. report, recommendat°, guidance doc., directive, monograph

English

SCIENSANO

Authors

Kenann Menager [2]; James Maddocks [3]; Louise Mathieu [4]; Rosie Richards [5]; Marlies Saelaert [6]; Wannes Van Hoof [7]

Keywords

  1. Data Space [8]
  2. Health data [9]
  3. Health Data Space [10]
  4. HP-JA-2020-1 [11]
  5. Joint Action [12]
  6. TEHDAS [13]
Article written during project(s) : 

Abstract:

This document is the final report from the TEHDAS iCitizen Work Package (Work Package 8) and presents citizen recommendations on how they want their data to be used and their desired role in the future European Health Data Space (EHDS). The recommendations summarise the key findings of the qualitative analysis of citizens’ contributions to the Healthy Data consultation. The aim of the public consultation was to better understand citizens’ perceptions and expectations regarding the secondary use of their health data and their role in its governance. These citizen recommendations are also inf…
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Associated health topics:

Quality of healthcare [14]
Source URL:https://sciensano.be/en/biblio/qualitative-study-assess-citizens-perception-sharing-health-data-secondary-use-and-recommendations

Links
[1] https://sciensano.be/sites/default/files/full_report_recommendations_en.pdf [2] https://sciensano.be/en/biblio?f%5Bauthor%5D=185210&f%5Bsearch%5D=Kenann%20Menager [3] https://sciensano.be/en/biblio?f%5Bauthor%5D=183585&f%5Bsearch%5D=James%20Maddocks [4] https://sciensano.be/en/biblio?f%5Bauthor%5D=182294&f%5Bsearch%5D=Louise%20Mathieu [5] https://sciensano.be/en/biblio?f%5Bauthor%5D=183587&f%5Bsearch%5D=Rosie%20Richards [6] https://sciensano.be/en/people/marlies-saelaert/biblio [7] https://sciensano.be/en/people/wannes-van-hoof/biblio [8] https://sciensano.be/en/biblio?f%5Bkeyword%5D=38086&f%5Bsearch%5D=Data%20%20Space [9] https://sciensano.be/en/biblio?f%5Bkeyword%5D=37767&f%5Bsearch%5D=Health%20data [10] https://sciensano.be/en/biblio?f%5Bkeyword%5D=37802&f%5Bsearch%5D=Health%20Data%20Space [11] https://sciensano.be/en/biblio?f%5Bkeyword%5D=38087&f%5Bsearch%5D=HP-JA-2020-1 [12] https://sciensano.be/en/biblio?f%5Bkeyword%5D=37801&f%5Bsearch%5D=Joint%20Action [13] https://sciensano.be/en/biblio?f%5Bkeyword%5D=37800&f%5Bsearch%5D=TEHDAS [14] https://sciensano.be/en/health-topics/quality-healthcare