Explained: Ayushman Bharat Digital Mission - Laying Data Protection Foundations For Open Digital Ecosystems In India

India has taken big strides in implementing National Open Digital Ecosystems (NODE) across multiple sectors like Health (Ayushman Bharat Digital Mission (ABDM)), Education (National Digital Education Architecture (NDEAR)), Agriculture (The India Digital Ecosystem of Agriculture (IDEA)), and Urbanisation (National Urban Information Stack), among others.

Among these, the most mature NODE, the Ayushman Bharat Digital Mission, stands out in terms of its robust data protection architecture built into its design and, in a way, lays the foundation for strengthening the country’s data privacy and security standards going forward.

ABDM, launched last September, adopts a ‘citizen-centric’ approach to strengthen the equity and accessibility of health services through a technology-driven, holistic healthcare programme approach. By providing a unique ID to every Indian citizen and by creating registries of clinical establishments, healthcare professionals, and pharmacies, it establishes a single source of truth about all the participants in India’s digital healthcare ecosystem.

Additionally, by integrating siloed data systems to foster health data exchange through open digital standards, it enables seamless access to personal health records across the National Digital Health Ecosystem (NDHE).

So, within NDHE, for every visit by a patient to any healthcare facility that creates a digital transaction, (e.g., prescriptions or diagnostic reports, also called Electronic Medical Records (EMR)), which can now be securely stored using the unique health ID. By threading together these EMRs over time, it creates a patient’s complete Electronic Health Record (EHR). Patients can seamlessly share these EMRs/EHR with different healthcare providers to enhance the efficiency and effectiveness of health services delivery.

However, how will ABDM’s system ensure safety, security, and privacy of an individual’s sensitive health information?

How the health information is kept safe and secure?

Security-by-design is a key principle embedded in the National Digital Health Blueprint (NDHB) that forms the basis of ABDM’s design. ABDM achieves this by implementing a well-thought-out federated architecture wherein the patient’s transactional data (EMRs), instead of being stored in more vulnerable, centralised systems, is held at/near the point of care and all other IT systems will have access to it only through links.

These links organised chronologically to constitute the patient’s EHR will also be stored at the state-level. No health records are held at national-level. Since each data type are stored at only one level, it ensures uniqueness and consistency.

Any personal health information in the form of a reference link moves across secure health networks and all such transactions are also watched over by the 24x7 security surveillance operations centre. This federated data architecture, infrastructure, and related processes ensure high levels of health information security.

How is my sensitive personal health information kept private and protected?

ABDM achieves privacy-by-design principle by placing the citizen in control of her/his health information through:

(a) in-built technological features such as consent manager, anonymisation, and privacy operations centre, and

(b) a dedicated Health Data Management Policy that outlines the rights of patients/citizens, i.e., ‘Data Principals’, and obligations of Health Information Providers/Users, i.e., ‘Data Fiduciaries’.

Technological interventions

The creation of EMR at the facility level, of the longitudinal EHR in the health locker using EMRs, and sharing of such EMRs/EHRs with Data Fiduciaries happens only after the patient consents to it as the Data Principal.

Secondly, ABDM’s anonymiser removes all the personally identifiable information from the EMRs/EHRs to protect privacy before sharing it. Both consent collection and anonymisation happen at the primary source of data capture at the health facility.

Thirdly, ABDM’s privacy operations centre will monitor all access to private data, review consent form templates, design customised templates for the most common purposes, audit privacy compliance, evangelise privacy principles, and enhance overall trust in the ecosystem.

Policy measures

ABDM’s Health Data Management Policy (HDMP) provides robust prescriptions for protecting rights of Data Principals and fulfilling obligations of Data Fiduciaries.

ABDM-HDMP needs data fiduciaries to obtain free, informed, and specific citizen consent, which cannot be later withdrawn. It mandates them to issue privacy notice prior to data collection or in case of changes to their privacy policies or intended purposes of data use.

It also empowers Data Principals with rights such as getting confirmation on information collection from fiduciaries, accessing data, knowing with whom was it shared, requesting rectifications, and most importantly, the ‘right to be forgotten’ with an option to opt out of the NDHE and can get their Health IDs deleted.

It also puts the onus of implementing privacy-by-design on data fiduciaries by honouring all the Fair Information Practice Principles (FIPP). All data fiduciaries are required by HDMP to setup Data Protection Officers for grievance redressal and allow for data principals to escalate unresolved issues to the Mission’s grievance redressal officer.

Hence, ABDM puts together a comprehensive set of technological and policy interventions to improve the security and privacy of patients’ health information.

Areas of improvements in ABDM’s data protection architecture

While the HDMP outlines various possible contraventions, their penalties are limited to a ban, suspension, or cancellation of digital health IDs. Experts opine that this may cause minor violations either going completely unpunished or inviting disproportionately higher penalties, thereby highlighting the need for a graded penalty system ranging from warnings, corrective actions, and monetary penalties to suspension, cancellation and instituting criminal proceedings depending on the cause.

To enforce the same, the need for the enactment of the impending Personal Data Protection Bill, 2019 for establishing overarching data protection legislation in the country cannot be understated. The HDMP is at best a set of rules which need legal strengthening to address privacy concerns, an issue that even UNAIDS has emphasised.

Also, the HDMP needs to further address the recourse available in case of unlawful re-identification of anonymised data, now a widely recognised threat. Additionally, the threat of data breach, especially given the sensitive nature of information, entails risks of public embarrassment, humiliation, loss of reputation and stigmatisation with possibilities of discrimination at workplaces and in access to insurance, further underscores the need for strengthening the legal framework with sector-specific laws like the USA’s The Health Insurance Portability and Accountability Act.

Secondly, given the inherently skewed power equation in the doctor-patient relationship due to informational inequality combined with lower sensitisation towards consent and its implications, HDMP falls short on prescribing behavioural nudges to simplify the process of consent-taking for making it more informed in reality.

The broad consent form should be accompanied with an information sheet explaining the rights to confirmation and access, correction and erasure, restricting or objecting to disclosure and data portability, as well as the process for grievance redressal, in an easy-to-understand language.

These aspects are well-analysed in the working paper by centre for Health, Equity, Law, and Policy and the Internet Freedom Foundation. It is also worthwhile to consider the option of providing privacy ratings/visual colour codes to various consent forms/artefacts to improve comprehensibility and generate interest among data principals to encourage them to read the detailed forms.

Overall, since consent is central to fully realise the benefits of privacy-by-design, it is extremely important to accompany the ABDM’s roll-out with a well-planned Information, Education, Communications (IEC) campaign to generate citizen awareness about their rights, obligations of fiduciaries, and importance of consent in the ecosystem.

In summary, ABDM does an excellent job at embedding security-and-privacy-by-design in its design components, and with certain critical improvements, it can truly empower citizens/patients towards safe and secure participation in the NDHE.