Reimagining Data Governance in India - A Citizen-Centric Approach to Health Data

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.

Q1. What is the key conceptual confusion in India’s current data governance policy, and how does it affect value creation?

Ans. The policy framework confuses data as a form of identity with data as a form of property, limiting innovation and hindering the monetisation and utilisation of valuable datasets like healthcare records.

Q2. What are the main challenges in implementing the Ayushman Bharat Digital Mission (ABDM)?

Ans. The main challenge lies in the lack of perceived value by patients and doctors at the point of data generation, leading to poor digital record creation and limited ecosystem engagement.

Q3. How do the data governance models of the US and UK differ from the Indian healthcare context?

Ans. While the US and UK follow corporatist and statist models respectively, these are unsuitable for India's highly privatised and decentralised healthcare system, necessitating a citizen-centric approach.

Q4. Why is the creation of a free market for health data important in India?

Ans. A free market empowers citizens to share and monetise their health data securely, driving innovation, improving insurance pricing, and enabling better healthcare delivery.

Q5. How can privacy and economic rights be balanced in India’s data governance framework?

Ans. By providing citizens with anonymisation tools and regulatory safeguards, India can ensure privacy while allowing individuals to treat their data as tradable economic property. 

Source:IE