We propose that traditional methods to protect patient privacy and control won't work in the new digitized health ecosystem where data is collected, transmitted, aggregated across thousands of nodes instantaneously. We examine the merits and limitations of proposed alternatives like the fiduciary framework that imposes accountability on those that use the data; privacy by design principles that rely on technological safeguards against abuse; or regulations.
February 1, 2020 Author(s): Abhijeet Wagmare, Adrian Gropper, Angshuman Sarkar, AV Sethuraman, Clay Heaton, Geetika Sethi, Guriq...
In comments to a Joint Committee of the India Parliament on the 2019 Personal Data Protection Bill, which aims to protect the personal data of individuals throughout India, we highlighted the implications of this law for health data and academic research being undertaken in the country.
On November 27 2017, in response to the white paper published by the Committee of Experts on Data Protection Framework for India, we recommended that data protection law encompass health data protection; systems that ensure privacy by design will fare better than systems based on consent and notice; data portability be interpreted as portability of structured health data; anonymization and aggregation over de-identification for securing data; and fiduciary responsibility of data controllers to the individual.