Consider representation regarding National Health Data Management Policy, Delhi High Court tells Centre

The Delhi High Court has directed the Centre to consider a petition raised by noted disability rights advocate Dr Satendra Singh regarding the lack of a public consultation process for the National Digital Health Mission’s Health Data Management Policy. The petition highlighted the unreasonably short deadline for submission of feedback during the Covid-19 pandemic as well as the exclusion of people with disabilities from the process.

The National Digital Health Mission (NDHM), announced by Prime Minister Narendra Modi, proposed to set up a National Digital Health Ecosystem. The aim, as per a government press release is to give every Indian citizen, “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”, with private stakeholders getting an equal opportunity to integrate with these building blocks and create their own products for the market.

Within two weeks of PM Modi announcing the launch on 15 August 2020, health IDs were created for 55,700 individuals and the the National Health Authority issued a press release announcing that the public consultation for the Draft Health Data Management Policy for NDHM and the deadline to submit feedback was 3 September 2020. This was extended by a week to 10 September.

This undue haste shown in bringing about a policy that has massive health implications for every Indian was challenged by noted disability rights advocate Dr Satendra Singh. Dt Singh filed a petition before the Delhi High Court earlier this week challenging the consultation process for the policy.

Inadequate public consultation

The petition underlines four major problems with the consultation process which has undermined minimum requirements for public participation in democratic decision-making.

• Short timeline – The consultation is being conducted in the midst of the Covid-19 pandemic when the functioning of individuals and organisations is disrupted. Analysis of the Draft Policy requires multidisciplinary expertise and people need time to consult with experts.
• Inaccessibility for visually impaired people – To participate a person has to fill the form on the NDHM website. But this is not possible for visually impaired people as 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. There are no alternatives and this is a violation of the Rights of Persons with Disabilities Act, 2016. Given that disabled people are among the most impacted stakeholders this is a huge lapse.
• Online-only mode of engagement – The consultation process is entirely online even though only 54% of the Indian population has access to the internet.
• English-only mode of engagement – The Health Data Management Policy is only available in English. Translated versions are not available for any of the 22 official languages recognised under the Constitution. Barely 10% of India’s speaks English.

The Delhi High Court bench noted the lack of meaningful public consultation and said this could be raised as a ground if the draft policy is challenged after notification. It has directed the government to consider Dr Singh’s representation in accordance with existing laws, rules and policies.

Read More here – Internet Freedom