Open Access#12020
MyData:applying human-centric principles to health data
Ball, M. P. (Mad P.); Chung, S. (Sherry); de Zeghe, I. (Isabelle); Fabianek, C. (Christoph); Grundstrom, C. (Casandra); Knowles, P. (Paul); Lähteenoja, V. (Viivi); Langford, J. (Joss)
Ball, M. P. (Mad P.); Chung, S. (Sherry); de Zeghe, I. (Isabelle); Fabianek, C. (Christoph); Grundstrom, C. (Casandra); Knowles, P. (Paul); Lähteenoja, V. (Viivi); Langford, J. (Joss); Lindén, F. (Fredrik); Perälä-Heape, M. (Maritta); Schieke, M. (Moira); Serdar, B. (Berrin); Siu, D. (Dixon); Wang, C.-C. (Chi-Chuan)
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.