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Ball, M.P.; Chung, S.; de Zegher, I.; Fabianek, C.; Grundstrom, C.; Knowles, P.; Lähteenoja, V.; Langford, J.; Lindén, F.; Perälä-Heape, M.; Schieke, M.; Serdar, B.; Siu, D.; Wang, C.-C. (2020) MyData : applying human-centric principles to health data, Medical Writing 29(2), pp. 64-69, https://journal.emwa.org/the-data-economy/mydata-applying-human-centric-principles-to-health-data/

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
Publish Date: 2021-01-20
Description:

Abstract

Modern 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.

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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:
Article
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).