Context:

• India’s population of 1.4 billion generates data with immense potential economic value, possibly rivaling 38 OECD nations when adjusted for Purchasing Power Parity (PPP).
• As technology proliferates, robust data governance policies must enable citizens to benefit from the value of their data.

Understanding the Policy Gap:

• Identity vs. property: A fundamental confusion.
• Policymakers often conflate data as identity (linked to privacy and personal rights) with data as property (a tradable economic resource).
• This conceptual confusion hinders value creation, innovation, and knowledge discovery.

Healthcare Data - A Case Study in Missed Opportunities:

• Current scenario - Public vs. private divide:
  • Large private hospitals have digital systems.
  • Government hospitals have basic digital setups (aided by the National Health Mission).
  • Small private clinics, where most Indians seek care, lack digital infrastructure and incentives.
• Consequences of poor digitisation:
  • No interoperable medical records for citizens.
  • Health insurers struggle with pricing competitiveness.
  • Researchers lack access to large datasets for medical or AI-driven discoveries.

Ayushman Bharat Digital Mission (ABDM) - The Governance Response:

• Framework and features:
  • Managed by: The National Health Authority.
  • Principles:
    • Citizens own their health data.
    • Interoperability across health facilities.
  • Components:
    • Registries (doctors, drugs, health facilities).
    • Middleware for data exchange.
    • Consent management system.
• Challenges in implementation:
  • Clinical data is generated during doctor-patient interactions, where future data value is not perceived.
  • Citizen engagement is key to realising data value and driving innovation.

Towards a Free Market for Health Data:

• Enabling citizen agency: If patients can sell/share their anonymised data, it incentivises:
  • Clinics to comply with ABDM.
  • Patients to maintain complete digital records.
  • Emergence of data intermediaries and health information exchanges.

Global Models vs. Indian Reality:

• United States - Health Insurance Portability and Accountability Act (HIPAA) model:
  • Patients can access, but not share, their data with third parties.
  • Hospitals and insurers monetise de-identified data without compensating patients.
• United Kingdom - National Health Service (NHS) model:
  • Health data owned by public institutions.
  • ~90% of records created and controlled by the NHS.
• Why don't these models fit India?
  • India's healthcare system is highly privatised and decentralised.
  • Neither corporatist (US) nor statist (UK/EU) models are suitable.

A Citizen-Centric Data Governance Vision:

• Principles for reform:
  • Empower citizens to treat data as property, not just as identity.
  • Build regulatory safeguards for privacy, including:
    • Anonymisation tools as digital public goods
    • Digital forensics to ensure transparency and reduce information asymmetry
• Way forward:
  • Shift from Western models of data protection to a locally relevant, innovation-friendly policy.
  • Recognise and harness the economic potential of citizen-owned data in the healthcare sector.

Conclusion:

• India must adopt a citizen-centric data governance framework that promotes individual agency, incentivises data interoperability, and fosters innovation in health systems.
• Recognising data as economic property rather than merely a marker of identity is crucial to unlocking the next wave of digital transformation in India’s healthcare ecosystem.