On August 26, a day when India recorded over 67,000 new cases of Covid-19, the Centre introduced a draft policy that aims to make sweeping changes to the country’s health ecosystem. The draft Health Data Management Policy of the National Digital Health Mission was released to the public for comments and feedback. The time given to comment on complex data storing infrastructure with far-reaching implications for individual privacy: one week.
“One week is ridiculous,” said T Sundaraman, former director of the National Health Systems Resource Centre, an advisory body to the Union health ministry. Usually, the time given to seek responses from the public is one month to three months, he said.
First, a look at what is at stake. The National Digital Health Mission, formally announced by the prime minister on Independence Day but in the works for a while, seeks to create a digital health ID for citizens. Potentially linked to Aadhaar, the 12-digit unique identification number linked to a person’s biometric details, the ID will be key to accessing a digital database containing medical and personal information.
The draft policy floated this week outlines how this data would be collected, processed, stored and shared. It covers “personal and sensitive personal data”.
Data points classed as “sensitive personal data” include an individual’s financial details, their physical and mental health, sex life, medical records, gender and sexuality, caste, religious and political beliefs as well as genetic and biometric records.
Data is to be stored at three levels – Central, state or Union Territory and health facility. It claims ownership of personal data lies with the individual. However, anonymised data, in an aggregated form, may be made available for research, statistical analysis and policy formulation.
The digital health mission has already raised ethical concerns, scepticism that collecting more data is not the answer to India’s health problems and suspicion that such a system is tailored for corporate interests rather than providing affordable healthcare. The pandemic showed that the lack of public services needs to be addressed urgently. But the immediate problem is the extraordinary haste in which the policy is being pushed through.
The narrow time window does not allow for a scrutiny of fundamental questions about the policy. “Who asked for a health ID?” Sundaram demanded. “We already have Aadhaar. Why is there a mission for this? And why is it located outside the [health] ministry? The real game is about how they are providing a digital framework for corporate entry.”
S Prasanna, a lawyer for petitioners in the Aadhaar case, felt it was “manifestly undemocratic” to push through such a policy in the middle of a pandemic, when “organised opposition” was difficult. “If they stick to the one week deadline then it just implies they are more interested in checking a box that says ‘public consultation’ rather than having effective and substantive consultation,” he said.
He also pointed to the dangers of introducing such a policy when India had no comprehensive privacy or data protection law in place. “It is interesting how legislation and policy that deepen citizenship rights – the data protection law, for instance – take years to materialise but a policy proposal that arguably undermines those very rights is sought to be pushed through in a matter of days,” he said.
Over the past few months, the Centre appears to have warmed to the idea of pushing through significant policy decisions while normal life remained suspended by the pandemic. Recently, it closed public consultations for the draft environmental impact assessment notification, which has been criticised for ignoring vital environmental protections. The consultation process was riddled with controversy – that it was rushed through during the pandemic, that young environmentalists were silenced and that the government failed to translate the policy into regional languages, which would have meant wider participation. Even with these constraints, the Centre received 1.7 million responses from the public.
The evolving policy model on consultations seems to be this: if the government does not like what the public has to say it will simply not hear them.
This reporting was supported by a grant from the Thakur Family Foundation. Thakur Family Foundation has not exercised any editorial control over the contents of this article.