Medical Writing The Data Economy MyData: Applying human-centric principles to health data

Volume 29, Issue 2 - The Data Economy

MyData: Applying human-centric principles to health data

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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Articles

Editorial
The data economy: A glossary
Presidents' Messages
EMWA News
EMWA’s newest special interest group: Sustainability SIG
Rush to publication – What do we have to lose?
The value of registry data in the clinical evaluation of medical devices
Big data in clinical research: Present and future
Leveraging standardised data in response to the novel coronavirus outbreak
Biostatistics, data management, and medical writing: A multidisciplinary approach to the development of the CTD integrated summaries
The new value of clinical data in Europe
Unlocking the potential of patient data through responsible sharing – has anyone seen my keys?
COVID-19 contagion, information, and misinformation
"Processing health-related data for scientific research: Is consent an appropriate legitimate ground?"
An interview with Cathal Gallagher of EMA’s Technical Anonymisation Group
A role for medical writers in overcoming commonly held misconceptions around FAIR Data
MyData: Applying human-centric principles to health data
Thriving in the data economy as data-fluent PhD graduates
Digital identifiers in scientific publishing and e-health
Winners of the Geoff Hall Scholarship Essay Competition
News from the EMA
Regulatory Matters
Regulatory Public Disclosure
Medical Devices
Getting your Foot in the Door
Journal Watch
Veterinary Medical Writing
Good Writing Practice
Out on Our Own

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Editoral Board

Editor-in-Chief

Raquel Billiones

Co-Editors

Evguenia Alechine

Jonathan Pitt

Managing Editor

Victoria White

Associate Editors

Anuradha Alahari

Jennifer Bell

Nicole Bezuidenhout

Claire Chang

Barbara Grossman

Sarah Milner

John Plant

Sampoorna Rappaz

Amy Whereat

Section Editors

Daniela Kamir

AI/Automation

Jennifer Bell

Biotechnology

Nicole Bezuidenhout 

Digital Communication

Somsuvro Basu

EMWA News 

Ana Sofia Correia 

Gained in Translation

Ivana Turek

Getting Your Foot in the Door

Wendy Kingdom / Amy Whereat

Good Writing Practice

Alison McIntosh 

In the Bookstores

Maria Kołtowska-Häggström

Lingua Franca and Beyond

Maddy Dyer

Publications

Lisa Chamberlain-James

Medical Communications/Writing for Patients

Payal Bhatia

Medical Devices

Evguenia Alechine

My First Medical Writing

Anuradha Alahari

News from the EMA

Adriana Rocha

Freelancing

Tiziana von Bruchhausen

Pharmacovigilance

Clare ChangZuo Yen Lee 

Regulatory Matters

Sam Hamilton

Regulatory Public Disclosure

Claire Gudex

Teaching Medical Writing

Louisa Ludwig-Begall / Sarah Kabani

The Crofter: Sustainable Communications

Louisa Marcombes

Veterinary Writing

Editors Emeritus

Elise Langdon-Neuner

Phil Leventhal

Layout Designer

Chris Monk