Tag: Policy Impact

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.

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.

In a roadmap published in the Journal of Internet Medical Research, we proposed a federated, patient-centric, and application programming interface (API)–enabled health information ecosystem that enables the exchange of health information in conformity with India’s evolving data protection and privacy laws. Our proposed model has been adopted and implemented by policymakers in India — first by the NITI Aayog in its approach paper for the National Health Stack, and then by the Ministry of Health and Family Welfare in its National Digital Health Blueprint.

"The Use of Human Mobility Data in Public Health Emergencies" is a white paper that summarizes key learnings from a four-part seminar, “Safe, Fair, Equitable and Responsible Use of Human Mobility Data,” which convened in March and April 2021 at the Radcliffe Institute for Advanced Studies at Harvard University.

The IDHN White Papers are an ongoing series of publications that respond to India’s evolving digital health ecosystem architecture and data protection laws. Our papers have helped shape the patient-centric federated API-enabled architecture of India’s evolving digital health platforms.