India

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 the government to ensure the "right to health" for all citizens, with each state responsible for providing free access to healthcare services. Despite this, India's healthcare system has long been underfunded, with the private sector playing a dominant role in healthcare provision. As a result, many healthcare expenses are borne directly by patients through out-of-pocket payments.

Historically, the government has introduced various health insurance schemes targeting specific groups, with different levels of coverage across states. However, these schemes have not significantly reduced the burden of out-of-pocket expenses. For example, in 2017-18, only around 37% of the population had any form of health coverage.

Other barriers to accessing healthcare include long wait times, perceived poor quality of public health services, and significant shortages in healthcare infrastructure and workforce (Tikkanen et al., 2020).

The Indian Constitution mandates the government to ensure the "right to health" for all citizens, with each state responsible for providing free access to healthcare services. Despite this, India's healthcare system has long been underfunded, with the private sector playing a dominant role in healthcare provision. As a result, many healthcare expenses are borne directly by patients through out-of-pocket payments.

Over the years, the government has introduced various health insurance schemes aimed at specific groups, with differing levels of coverage across states. However, these schemes have not significantly reduced the burden of out-of-pocket expenses. For instance, in 2017-18, only around 37% of the population had any form of health insurance coverage.

Barriers to healthcare access persist, including long wait times, perceived poor quality of public health services, and substantial shortages in healthcare infrastructure and workforce. (Tikkanen et al., 2020)

According to the most recent data from 2010, this coverage includes both those enrolled in health insurance schemes and those who receive free access to state-provided healthcare services.

In 2021, NITI Aayog (the National Institution for Transforming India) reported that approximately 70% of India's population had some form of health insurance coverage, including state government schemes, social insurance programmes, and private insurance (NITI Aayog, 2021). This marks a significant increase from 2010, when only 12.5% of the population was covered by health insurance (Our World in Data, n.p.).

 

Out-of-pocket expenditure India.png
Source: https://data.worldbank.org/indicator/SH.XPD.OOPC.CH.ZS?locations=IN

Public vs private

Health care spending by country in 2021 (4).svg
Source: The World Bank.
The pink column refers to the public expenditure as a % of the country’s total healthcare expenditure. The blue dot is the country’s expenditure on health per capita, expressed in international dollars at purchasing power parity.

 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:

  • Federated Architecture: This model enables seamless information flow between different healthcare players, allowing 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: A strong emphasis is placed on adopting open standards and open-source software to facilitate interoperability between diverse health systems. This approach seeks to integrate both existing health information systems and new digital health initiatives smoothly, creating a unified ecosystem.

  • Patient-Centric Approach: The blueprint ensures that 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 for ease of adoption and are essential for 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.

(Ministry of Health & Family Welfare, 2019)

 

As India's pioneering healthcare digital transformation project, the Ayushman Bharat Digital Mission (ABDM) presents a fascinating case, 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 to study and emulate (Dans, 2020).

 

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 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.

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

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:

  1. Unified Health Interface (UHI):
    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).

  2. Health Information Exchange Consent Manager (HIE-CM):
    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).

  3. Health Claims Exchange (HCX):
    HCX handles health claims using the cClaims standard and provides a platform for managing health claims, policy markup language, and bill markup language.

The National Health Authority (NHA) is the body mandated with steering ABDM. It provides a certification framework for PHR applications. To build a National Health Authority-licenced system there are 3 stages of compliance:

  • Milestone 1 (M1): Verification and creation of the ABHA (Ayushman Bharat Health Account).

  • Milestone 2 (M2): Health Information Providers (HIPs) can share records with another party using APIs and patient consent.

  • Milestone 3 (M3): Health Information Users (HIUs) can retrieve and display patient data. 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.

National PHRs

The following is a list of Personal Health Record (PHR) platforms approved by the National Health Authority (NHA) for the roll-out of the Ayushman Bharat Digital Mission (ABDM) (The full list can be found 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

Here are insights about ABDM : https://dashboard.abdm.gov.in/abdm/

Bibliography

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