Delhi HC directs govt to consider representation regarding national Health Data Management Policy #SaveOurPrivacy

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Tl;dr

Today, i.e. 03 September 2020, the Delhi High Court heard a petition which challenged the public consultation process for the National Digital Health Mission's Health Data Management Policy. The petition raised concerns about the unreasonably short deadline for submission of feedback at the height of the COVID-19 pandemic, and highlighted how the existing process excludes persons with disabilities, non-English speakers and people without internet access. After hearing the petitioner's counsel, the Delhi High Court directed the government to consider the petitioner's representation and noted that inadequate public consultation could be raised as a ground if the Draft Policy was challenged after its notification.

Background

The National Digital Health Mission (NDHM) was announced by the Prime Minister on the 74th Independence Day, and it envisages the creation of a National Digital Health Ecosystem with six key features- HealthID, DigiDoctor, Health Facility Registry, Personal Health Records, Telemedicine, and e-Pharmacy. A government press release describes NDHM as: “Every Indian citizen will get a Health ID which will be a repository of all health-related information, of a person, such as medical tests, previous prescriptions, diagnosis, treatments, all historical health records” and that “private stakeholders’ will have an equal opportunity to integrate with these building blocks and create their own products for the market.”

Within the first two week of its launch on 15 August 2020, health IDs were created for 55,700 individuals under NDHM. After launching the programme in six Union Territories, the National Health Authority issued a press release on 26 August 2020 announcing the public consultation for the Draft Health Data Management Policy for NDHM and the deadline to submit feedback was 03 September 2020. On 31 August 2020, the deadline was extended by another week till 5:00 PM on 10 September 2020.

Petition before Delhi High Court

A writ petition was filed by Dr. Satendra Singh, a doctor and noted disability rights activist, before the Delhi High Court earlier this week which challenged the consultation process for the Draft Health Data Management Policy. The petition outlined four major problems with the consultation process which undermined minimum requirements for public participation in democratic decision-making.

  1. Short 15 day timeline
    The consultation is being conducted in the middle of the COVID-19 pandemic when functioning of individuals and organizations is disrupted and people are finding it difficult to organize, collaborate, hold meetings etc. Analysis of the Draft Policy also requires multidisciplinary expertise in computer science, law, public health and medical ethics. Therefore, people need more time to consult and confer with experts and other stakeholders. In particular, healthcare workers are fully engrossed in management of the COVID-19 pandemic, and it is unreasonable to expect them to analyze and evaluate such a complex policy document within 15 days.
  2. Inaccessibility for persons with visual impairments
    In order to participate in the public consultation, an individual is required to fill the form available on NDHM’s website. At present, the form cannot be filled by persons with visual disabilities since the user must fill a CAPTCHA prior to submitting their response. A CAPTCHA cannot be read by screen reading software used by persons with visual disabilities, and in the absence of any alternatives, its use violates rights guaranteed under the Rights of Persons with Disabilities Act, 2016. Persons with disabilities have distinct healthcare related rights and are specifically-impacted stakeholders to NDHM. Therefore, the consultation process must be conducted in a manner that satisfies the government's statutory obligation to provide reasonable accomodation under the Rights of Persons with Disabilities Act, 2016.
  3. Online-only mode of engagement
    The consultation process is entirely online even though only 54% of the Indian population has access to the internet. This is contrary to the 2014 Pre-Legislative Consultation Policy, which recognized that every draft for consultation must be published not just on the internet but also by other means.
  4. English-only mode of engagement
    The Health Data Management Policy is only available in English and translated versions are not available for any of the 22 official languages recognized under the Eighth Schedule of the Constitution.The lack of translated versions will massively undermine the ability of the public to participate in the consultation process since census data suggests that around 13 crore people in India speak English, which is barely 10% of the country’s total population.

What happened during the hearing?

The writ petition filed by Dr. Satendra Singh was listed before a bench of Chief Justice DN Patel and Justice Prateek Jalan of the Delhi High Court. During the hearing, the bench indicated that it could not go into the matter at this stage, especially since there was no statutory obligation to hold public consultation. It should be noted that NDHM and the Draft Policy do not have any basis in legislation, and therefore, a statutory obligation to hold public consultation is not possible.  However, despite this, the Court directed the government to consider the petitioner's representation sent on 29 August 2020 in accordance with existing laws, rules and policies. The Court also noted that the issue of lack of meaningful public consultation could be raised as a ground of challenge if the Draft Policy is challenged on substantive grounds after its notification.

This blogpost will be updated once the final order of the Delhi High Court is published and to provide updates about follow up actions including further representations and RTIs. IFF provided legal support for this case, and the petitioner was represented in today's hearing by a legal team comprising of Advocates Rajshekhar Rao, Vinayak Mehrotra, Vrinda Bhandari, Devdutta Mukhopadhyay and Sanjana Srikumar.

Important Documents

  1. Writ Petition filed by Dr. Satendra Singh (link)