Digitised Health Care

The Economic Times     3rd September 2020     Save    
QEP Pocket Notes

Context: The draft Health Data Management Policy of the National Digital Health Mission (NDHM) is ambitious but raises privacy concerns.

Features of the Draft:

  • Defining the stakeholders: In the proposed health policy, citizens are “data principals”, hospitals and doctors “health information providers”, and the government and its agencies “health information users”.
  • Creating an integrated Data Storage System: Records may be held by different service providers but linked through a unique health ID.
    • HealthID: This ID would be on the lines of Aadhaar but not Aadhaar itself, although it may be linked to it.
    • This would allow individuals to be treated anywhere, increasing accessibility.
  • Enlarged coverage of institutions: A large number of institutions down to the local pharmacy could be considered fiduciaries under this policy.
  • Provision of Consent: In theory, the consent of the individual will be asked for before data collection, and that consent can also be withdrawn.
  • Sharing of the Anonymised Data: for facilitating health and clinical research, academic research, archiving, statistical analysis, and policy formulation.

Issues with the draft: Privacy Concerns:

  • Not backed by any legislation: Proposed legislation has been pending since 2018, and the drafts released into public domain raise serious concern.
  • Unnecessary duplication of Data: Voluntary provision of linking healthID with Aadhar leads to unnecessary duplication of an already extant ID system.
  • Collection of Irrelevant data: It could include financial information; physical, physiological, and mental health data; sex life and sexual orientation; genetic data; and “religious or political belief or affiliation”.
  • Widening coverage may lead to data-leakages: It is unrealistic to assume such a wide range of fiduciaries will be data-secure.
  • Consent made irrelevant: In practice, given a system where data on so many parameters can be collected by such a wide range of fiduciaries, and disseminated for so many purposes, consent becomes irrelevant.

Conclusion: The draft seems designed to enable the commercial exploitation of data without paying much heed to protect the privacy of citizens. Sensible policy formulation could certainly enable better health care.

QEP Pocket Notes