Centre for Internet & Society

Recent health data policies have failed to even mention the CoWIN platform.

The article was originally published in the Quint on 19 June 2023.


Last week, it was reported that due to an alleged breach of the CoWIN platform, details such as Aadhaar and passport numbers of Indians were made public via a Telegram bot.

While Minister of State for Information Technology Rajeev Chandrashekar put out information acknowledging that there was some form of a data breach, there is no information on how the breach took place or when a past breach may have taken place.

This data leak is yet another example of our health records being exposed in the recent past – during the pandemic, there were reports of COVID-19 test results being leaked online. The leaked information included patients’ full names, dates of birth, testing dates, and names of centres in which the tests were held.

In December last year, five servers of the All India Institute of Medical Science (AIIMS) in Delhi were under a cyberattack, leaving sensitive personal data of around 3-4 crore patients compromised.

In such cases, the Indian Computer Emergency Response Team (CERT-In) is the agency responsible for looking into the vulnerabilities that may have led to them. However, till date, CERT-In has not made its technical findings into such attacks publicly available.

The COVID-19 Pandemic Created Opportunity

The pandemic saw a number of digitisation policies being rolled out in the health sector; the most notable one being the National Digital Health Mission (or NDHM, later re-branded as the Ayushman Bharat Digital Mission).

Mobile phone apps and web portals launched by the central and state governments during the pandemic are also examples of this health digitisation push. The rollout of the COVID-19 vaccinations also saw the deployment of the CoWIN platform.

Initially, it was mandatory for individuals to register on CoWIN to get an appointment for vaccination, and there was no option for walk-in-registration or to book an appointment. But, the Centre subsequently modified this rule and walk-in appointments and registrations on CoWIN became permissible from June 2021.

However, a study conducted by the Centre for Internet and Society (CIS) found that states such as Jharkhand and Chhattisgarh, which have low internet penetration, permitted on-site registration for vaccinations from the beginning.

The rollout of the NDHM also saw Health IDs being generated for citizens.

In several reported cases across states, this rollout happened during the COVID-19 vaccination process – without the informed consent of the concerned person.

The beneficiaries who have had their Health IDs created through the vaccination process had not been informed about the creation of such an ID or their right to opt out of the digital health ecosystem.

A Web of Health Data Policies

Even before the pandemic, India was working towards a Health ID and a health data management system.

The components of the umbrella National Digital Health Ecosystem (NDHE) are the National Digital Health Blueprint published in 2019 (NDHB) and the NDHM.

The Blueprint was created to implement the National Health Stack (published in 2018) which facilitated the creation of Health IDs. Whereas the NDHM was drafted to drive the implementation of the Blueprint, and promote and facilitate the evolution of NDHE.

The National Health Authority (NHA), established in 2018, has been given the responsibility of implementing the National Digital Health Mission.

2018 also saw the Digital Information Security in Healthcare Act (DISHA), which was to regulate the generation, collection, access, storage, transmission, and use of Digital Health Data ("DHD") and associated personal data.

However, since its call for public consultation, no progress has been made on this front.

In addition to documents that chalk out the functioning and the ecosystem of a digitised healthcare system, the NHA has released policy documents such as:

  • the Health Data Management Policy (which was revised three times; the latest version released in April 2022)

  • the Health Data Retention Policy (released in April 2021)

  • Consultation paper on the Unified Health Interface (UHI) (released in December 2022)

Along with these policies, in 2022, the NHA released the NHA Data Sharing Guidelines for the Pradhan Mantri Jan Aarogya Yojana (PM-JAY) – India’s state health insurance policy.

However these draft guidelines repeat the pattern of earlier policies on health data, wherein there is no reference to the policies that predated it; the PM-JAY’s Data Sharing Guidelines, published in August 2022, did not even refer to the draft National Digital Health Data Management Policy (published in April 2022).

Interestingly, the recent health data policies do not mention CoWIN. Failing to cross-reference or mention preceding policies creates a lack of clarity on which documents are being used as guidelines by healthcare providers.

Can a Data Protection Bill Be the Solution?

The draft Data Protection Bill, 2021, defined health data as “…the data related to the state of physical or mental health of the data principal and includes records regarding the past, present or future state of the health of such data principal, data collected in the course of registration for, or provision of health services, data associated with the data principal to the provision of specific health services.”

However, this definition as well as the definition of sensitive personal data was removed from the current version of the Bill (Digital Personal Data Protection Bill, 2022).

Omitting these definitions from the Bill removes a set of data which, if collected, warrants increased responsibility and increased liability. Handling of health data, financial data, government identifiers, etc, need to come with a higher level of responsibility as they are a list of sensitive details of a person.

The threats posed as a result of this data being leaked are not limited to spam messages or fraud and impersonation, but also of companies that can get a hand on this coveted data and gather insights and train their systems and algorithms, without the need to seek consent from anyone, or without facing the consequences of harm caused.

While the current version of the draft DPDP Bill states that the data fiduciary shall notify the data principal of any breach, the draft Bill also states that the Data Protection Board “may” direct the data fiduciary to adopt measures that remedy the breach or mitigate harm caused to the data principal.

The Bill also prescribes penalties of upto Rs 250 crore if the data fiduciary fails to take reasonable security safeguards to prevent a personal data breach, and a penalty of upto Rs 200 crore if the fiduciary fails to notify the data protection board and the data principal of such breach.

While these steps, if implemented through legislation, would make organisations processing data take their data security more seriously, the removal of sensitive personal data from the definition of the Bill, would mean that data fiduciaries processing health data will not have to take additional steps other than reasonable security safeguards.

The absence of a clear indication of security standards will affect data principals and fiduciaries.

Looking to bring more efficiency to governance systems, the Centre launched the Digital India Mission in 2015. The press release by the central government reporting the approval of the programme by the Cabinet of Ministers speaks of ‘cradle to grave’ digital identity as one of its vision areas.

The ambitious Universal Health ID and health data management policies are an example of this digitisation mission.

However breaches like this are reminders that without proper data security measures, and a system for having a person responsible for data security, the data is always vulnerable to an attack.

While the UK and Australia have also seen massive data breaches in the past, India is at the start of its health data digitisation journey and has the ability to set up strong security measures, employ experienced professionals, and establish legal resources to ensure that data breaches are minimised and swift action can be taken in case of a breach.

The first step to understand the vulnerabilities would be to present the CERT-In reports of this breach, and guide other institutions to check for the same so that they are better prepared for future breaches and attacks.

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