India

Owned by Federica Andreoni, created
Last updated: Nov 29, 2024
8 min read

The last time Indians were anyone’s subjects […] was when the queen of England ruled India. And so, to underscore the central importance of the individual in data protection, the data subject is referred to, in India, as the data principal. Extending this principle even further, the data controller is referred to as the data fiduciary since it holds the data principal’s personal data in trust.

Justice B.N. Srikrishna said this when the Indian government tasked him with drawing up a new regulatory framework for data protection. Changing the naming convention was one of his first acts (Rahul 2023).

Country’s healthcare system in a nutshell

The Indian Constitution mandates that the government ensure the "right to health" for all citizens, with each state responsible for providing free access to healthcare services (Tikkanen et al., 2020).

Statistics on health insurance coverage reveal a significant increase from 2010 to 2024. In 2010, only 12.5% of the population had health insurance (Our World in Data, n.p.). By 2017-18, this figure had risen to approximately 37% (Tikkanen et al., 2020). By 2021, the National Institution for Transforming India (NITI Aayog) reported that about 70% of the population was covered by some form of health insurance, including state government schemes, social insurance programmes, and private insurance (NITI Aayog, 2021).

Historically, the government introduced various health insurance schemes targeting specific groups, with coverage levels differing across states. However, despite these efforts, India’s healthcare system has remained underfunded. This has resulted in critical shortages of healthcare infrastructure and workforce, lengthy wait times, and perceptions of poor quality in public health services. Consequently, the private sector has long played a dominant role in healthcare provision (Tikkanen et al., 2020).

Furthermore, the introduction of government health insurance schemes has not significantly reduced the burden of out-of-pocket expenses, leaving many patients to bear healthcare costs directly (Tikkanen et al., 2020).

The graphs below illustrate out-of-pocket expenditures in India from 2000 to 2024 and the change in the percentage of the population covered by health insurance from 2010 to 2024.

 

Out-of-pocket expenditure India.png
Source: World Bank, 2024 World Bank Open Data

 

 

Copy of PKB_Book Cover and Slides_20241118 (4).svg
Source:  Our World in Data; Tikkanen et al., 2020; NITI Aayog, 2021

Public vs private

The national infrastructure

India's National Health Policy (NHP) of 2017 set out to achieve the highest possible level of health and well-being for people of all ages, focusing on preventive and promotive healthcare, as well as universal access to quality health services without financial hardship.

To support this vision, the Ministry of Health and Family Welfare established a committee led by Shri J. Satyanarayana to develop an implementation framework for the National Health Stack. This effort resulted in the creation of the National Digital Health Blueprint (NDHB), which serves as the foundation for the country’s digital health transformation.

Published in 2019, the NDHB outlines the context, rationale, scope, and implementation framework for building a nationwide digital healthcare ecosystem, known as the Ayushman Bharat Digital Mission (ABDM). The NDHB’s primary goals are to create an integrated digital health ecosystem, reduce out-of-pocket expenses, and achieve Universal Health Coverage (UHC).

The key objectives and proposals of the National Digital Health Blueprint (NDHB) are (Ministry of Health & Family Welfare, 2019):

  • Federated Architecture: information flows between different healthcare players, with decentralised data management at national, state, and facility levels. The aim is to ensure interoperability while maintaining flexibility in managing health data across the country.

  • Interoperability and Open Standards: adopting open standards and open-source software to facilitate interoperability between diverse health systems. Integration seeks both existing health information systems and new digital health initiatives smoothly, creating a unified ecosystem.

  • Patient-Centric Approach: citizens have full control over their health data, with privacy and data protection embedded into the system’s design. Stringent security measures for data processing and storage are included to safeguard personal health information.

  • Core Building Blocks: The NDHB introduces key components such as Health IDs, Health Data Dictionaries, Electronic Health Records (EHR), and Personal Health Records (PHR). These core elements are designed to be minimalistic to ease adoption while building a unified health information infrastructure.

  • Integration of Health Services: The blueprint aims to integrate various national health programs, such as Ayushman Bharat, Reproductive Child Healthcare, and NIKSHAY (for tuberculosis), onto a unified IT platform. This integration is intended to enhance the efficiency of service delivery and ensure timely access to healthcare.

  • Stakeholder Collaboration: The NDHB encourages active participation and feedback from all stakeholders, including healthcare providers, technology developers, and the general public, to refine and effectively implement its digital health strategies.

The Ayushman Bharat Digital Mission (ABDM) presents a fascinating case, as India's pioneering healthcare digital transformation project, particularly due to the country's vast population. According to Forbes, the scale and complexity of data management within ABDM could serve as a blueprint for other national health programs worldwide (Dans, 2020).

ABDM Technology Stack

ABDM includes several health registries such as ABHA (a 14-digit patient identifier), HPR (Health Professional Registry), and HFR (Health Facility Registry). It will soon incorporate drug registries, enabling manufacturers to update and verify drugs through health authorities, allowing patients to check if a drug is unlicensed.

ABHA patient identifier

ABHA is a 14-digit unique identifier. Patients also create an ABHA address, similar to an email structure, which can be used to manage their healthcare data. While patients can create multiple ABHA addresses, they are uniquely identified within the healthcare ecosystem by their ABHA number. When a doctor shares healthcare records with a patient, they link it to the patient's preferred ABHA address, creating a part of their longitudinal health record.

ABHA leverages Aadhaar, a 12-digit unique identifier for Indian citizens, widely used in banking for KYC purposes. Although there are other methods for creating an ABHA (e.g., using a driving licence), Aadhaar allows for seamless, instant digital creation. Other methods require additional verification and authentication.

HPID professional identifier

Healthcare providers also have their own organisational IDs for each patient, and care providers are themselves uniquely identified through the HPID (Health Professional ID).

ABDM interoperability gateways

The Ayushman Bharat Digital Mission (ABDM) relies on three key gateways and protocols to ensure interoperability through open standards: the Unified Health Interface (UHI), the Health Information Exchange Consent Manager (HIE-CM), and the Health Claims Exchange (HCX). Below is a more detailed explanation of each:

Unified Health Interface (UHI) clinical services

UHI facilitates various health services through Telemedicine APIs, including doctor discovery and appointment booking; Lab & Drugs APIs, for discovering labs and pharmacies; and other Health Service APIs, such as checking bed availability in healthcare facilities.
User applications for Unified Health Interface(UHI) are Health Service Provider Applications (HSPA) and End User Application (EUA).

Health Information Exchange Consent Manager (HIE-CM) data movement including for PHR

HIE-CM manages health records, enabling secure health data sharing with consent, and facilitating the collation of health documents such as diagnostics, reports, and prescriptions. It also supports the aggregation of health data for policy and analytics purposes.

User applications for Health information exchange Consent Manager (HIE-CM) are Personal Health Records Applications (PHRs) and Hospital Management Information Systems (HMIS/LMIS).

Health Claims Exchange (HCX) policies and payments

HCX handles health claims using the cClaims standard and provides a platform for managing health claims, policy markup language, and bill markup language.

National PHRs

The National Health Authority (NHA) is the body responsible for steering ABDM. As part of this, it provides a certification framework for PHR applications. There are 3 stages of NHA compliance:

  • Milestone 1 (M1): M1 signifies that a PHR application has met the initial compliance requirements necessary for certification. Specifically, this milestone focuses on enabling patients to verify their identity and create an ABHA.

  • Milestone 2 (M2): at this stage, PHR applications must demonstrate the capability to manage patient health data securely. This includes storing, retrieving, and in particular sharing health records as needed. The application should be able to share data with other Health Information Providers (HIPs) and platforms using APIs.

  • Milestone 3 (M3): to meet M3, the PHR has to develop Health Information User (HIU) services so that healthcare professionals can retrieve and view patients data. In this system, when a doctor requests to pull a patient’s data, a consent request is sent to the patient’s app, allowing the doctor to access the necessary records. Patients can also request to retrieve their own data from provider systems linked to their ABHA.

Below is a list of certified PHRs (the latest list is here):

  • Plus ninety one by Plus 91

  • Driefcase, by Driefcase Health Tech Pvt Ltd

  • Eka.care by Orbi Health Private Limited

  • Paytm by Paytm

  • Raxa by Raxa Health

  • Arogya Setu by Arogya Setu

  • Bajaj Finserv Health by Bajaj Finserv Health

  • Parchaa by Panscience AI Healthcare Pvt Ltd

  • Health-e by Anahat Solutions Pvt Ltd

Statistics

The following data has been retrieved on the 18th of November 2024 at 3 pm.

Ayushman Bharat Health Accounts (ABHA) created:

  • 18th November 2024: 148,614

  • November 2024: 5,672,874

  • Overall: 684,093,385

Health Records Linked:

  • 18th November 2024: 179,547

  • November 2024: 6,596,401

  • Overall: 449,140,384

Bibliography

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