India needs citizen-centric healthcare data governance model

Source: The post India needs citizen-centric healthcare data governance model has been created, based on the article “Giving people incentive to digitise medical data can help fill critical gaps in health information” published in “Indian Express” on 9 April 2025. India needs citizen-centric healthcare data governance model.

UPSC Syllabus Topic: GS Paper2- Governance-citizens charters, transparency & accountability

Context: India’s vast population and rapid technological growth suggest that the value of data generated by Indians may soon rival that of OECD countries. However, poor data governance—especially in healthcare—is a major barrier. The article critiques current digital governance models and proposes a citizen-centric approach to unlock the full value of data.

Current State of Healthcare Data Governance in India

1. India generates huge volumes of data every day due to its 1.4 billion population. Despite active digital policy efforts, there is a fundamental confusion in governance: policymakers do not clearly differentiate between data as identity and data as property.
2. This misunderstanding restricts innovation and economic potential, especially in the healthcare sector. While large hospitals and government facilities are digitizing health records, most medical consultations happen in small private clinics, which lack the incentive or capacity to digitize. This results in fragmented or missing patient records, limiting long-term access and continuity of care.

Barriers to Effective Data Sharing in Healthcare

1. A major barrier is the dominance of privacy-first policies influenced by Western countries. The U.S.’s HIPAA allows patients to access their own data but not to share it freely. Hospitals and insurers can trade anonymized data for profit, but patients get no share.
2. In the UK, health data is owned and controlled by the NHS, not patients. While both systems are rooted in protecting privacy, they deny individuals the right to control or monetize their own data.
3. These models are not suitable for India’s decentralized and privatized healthcare system, where empowering individuals is more practical than a top-down model.

Challenges Addressed by the Ayushman Bharat Digital Mission (ABDM)

1. The ABDM, by the National Health Authority, is a framework to make citizens owners of their health data. It enables access across facilities through registries, processing systems, and a consent management platform.
2. However, implementation faces a key problem: clinical data is not naturally recorded during doctor-patient interactions, as neither party sees future value in it. Without this value recognition, data remains underutilized.

Proposed Changes to Enhancing Data Governance in India

1. A citizen-centric model is proposed, where data is treated as a tradable asset. People should have the right to hold, share, or monetize their data. With the help of privacy-preserving tools like anonymization and digital forensics, individuals can safely participate in a free and secure data market.
2. This approach can boost healthcare efficiency, support AI-based solutions, and enable economic benefits for citizens. It aligns with India’s unique system and unlocks data’s true value.

Conclusion:

India needs to rethink its data governance approach. Empowering citizens to control and benefit from their data will unlock economic value, especially in health, and position India as a global leader in digital innovation.

Question for practice:

Examine how a citizen-centric approach to data governance can address the challenges in India’s healthcare data ecosystem.