MyData : applying human-centric principles to health data |
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Author: | Ball, Mad P.1,2,3; Chung, Sherry1,4,5; de Zeghe, Isabelle1,6; |
Organizations: |
1MyData Health Thematic Group 2Open Humans Foundation, United States 3MyData Global ry, Helsinki, Finland
4Numbers Co., Ltd, Taiwan
5MyData Taiwan Hub 6b!loba, Tervuren, Belgium 7OwnYourData, Austria 8MyData Austria Hub 9University of Oulu, Oulu, Finland 10MyData Oulu Hub 11The Human Colossus Foundation, Geneva, Switzerland 12University of Helsinki, Helsinki, Finland 13Activinsights Ltd, Kimbolton, UK 14University of Exeter, Exeter, UK 15Coelition, Exeter, UK 16Grandezza Konsult AB, Stockholm, Sweden 17MyData Sweden Hub Non-profit Association, Lidingö, Sweden 18Grapevine World LLC, Vienna, Austria 19University of Wisconsin, Madison, Wisconsin, United States 20Cubismi Inc, Madison, Wisconsin, United States 21Cloud Privacy Labs LLC, Greenwood Village, Colorado, United States 22University of Colorado Denver, Aurora, Colorado, United States 23Personium Project, Tokyo, Japan 24MyData Japan Hub 25National Taiwan University, Taipei, Taiwan |
Format: | article |
Version: | published version |
Access: | open |
Online Access: | PDF Full Text (PDF, 0.5 MB) |
Persistent link: | http://urn.fi/urn:nbn:fi-fe202101202215 |
Language: | English |
Published: |
European Medical Writers Association,
2020
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Publish Date: | 2021-01-20 |
Description: |
AbstractModern data legislation increasingly empowers citizens, and therefore patients, with rights to access and control their health data. The mechanisms needed to exercise modern data rights are currently underdeveloped and underserving individuals and societies. MyData is the human-centric approach to shift the power of personal data more equitably into the hands of individuals as part of a fair data economy. In this article, we present different scenarios that apply the MyData principles for human-centric control of health data. These scenarios demonstrate the potential of the human-centric approach for turning data rights into truly actionable points for policy makers, healthcare stakeholders, and medical communicators. see all
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Series: |
Medical writing |
ISSN: | 2047-4806 |
ISSN-E: | 2047-4814 |
ISSN-L: | 2047-4806 |
Volume: | 29 |
Issue: | 2 |
Pages: | 64 - 69 |
Type of Publication: |
A1 Journal article – refereed |
Field of Science: |
3141 Health care science 113 Computer and information sciences |
Subjects: | |
Funding: |
CCW was partially funded by a research grant from the Ministry of Science and Technology in Taiwan (MOST-107–2636-B-002–002). The funders had no role in the manuscript preparation or publication decisions. |
Copyright information: |
© 2020 The Author(s). |