National Digital Health Mission Data Policy Consultation: Not now, not like this, not without all of us! #SaveOurPrivacy

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Tl;dr

We wrote to the Ministry of Health & Family Welfare and the National Health Authority after the Delhi High Court directed the government to decide concerns surrounding the consultation for the National Digital Health Mission's Health Data Management Policy in accordance with existing laws, rules and policies. The representation was sent by Dr. Satendra Singh, the petitioner before the Delhi High Court and it highlights how the consultation process is still in violation of the Rights of Persons with Disabilities Act 2016, Official Languages Act 1963 and the Pre-Legislative Consultation Policy 2014. The representation urges the government to re-calculate 30 days for submission of feedback after implementing recommended changes and to extend the deadline.

Background

On 03 September 2020, the Delhi High Court heard a writ petition filed by Dr. Satendra Singh, a doctor and noted disability activist, which challenged the 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. In its order, the Delhi High Court directed the government to consider the petitioner's representation in accordance with laws, rules and policies, and further noted that inadequate public consultation could be raised as a ground if the Draft Policy was challenged after its notification (Read more here).

Subsequent to the hearing before the Delhi High Court, the National Health Authority announced that the deadline for submission of feedback would be extended till 21 September 2020 and people could send their feedback through offline modes such as post or courier as well. It also indicated that it was undertaking measures to make the consultation process accessible for persons with disabilities in accordance with existing government policy.

What problems remain?

The representation acknowledges the steps taken by the government to improve the consultation process but explains that several statutory obligations and policy commitments have still not been complied with.

  1. Violation of Rights of Persons with Disabilities Act, 2016
    Section 46 of the RPWD Act provides all government and private websites a time period of two years to make information and communication technology accessible to persons with disabilities in the manner required under Section 42 of the RPWD Act and  Rule 15(c) of the RPWD Rules. Since the RPWD Rules were notified on 15 June 2017, the deadline to make all government and private websites accessible was 15 June 2019.
    Yet in August 2020, National Health Authority introduced an inaccessible measure in the online form for the consultation for the Draft Policy on its website. The online form requires the user to fill an image CAPTCHA which is inaccessible for persons with visual impairment, who are protected under Clause 1(B) of the Schedule to RPWD Act. Further, an alternative option of making submissions by email has not been provided either. While submissions can be sent via post or courier, this is significantly more cumbersome and cannot be the only alternative available to persons with visual impairments who have a statutorily guaranteed right to access government websites on an equal basis. The use of image CAPTCHA in the absence of any accessible alternatives also violates Clause 6.6.3 of the Guidelines for Indian Government Websites issued under Rule 15(c) of the RPWD Rules.

  2. Violation of Official Languages Act, 1963
    At present, the Draft Policy is only available in English, and translated versions are not available for any of the 22 languages recognized under the Eighth Schedule of the Constitution. At the bare minimum, the Draft Policy must be translated to Hindi since there is a statutory obligation under Section 4(i) of the Official Languages Act, 1963 to publish all resolutions, general orders, rules, notifications, administrative or other reports or press communiques issued by the Central Government in both English and Hindi.

  3. Inconsistency with Pre-Legislative Consultation Policy, 2014
    The Draft Policy has been published on the official NDHM website but there is a need to give it wide publicity through print and electronic media to reach citizens who may not have access to the internet. This approach is also supported by the Pre-Legislative Consultation Policy issued by the Ministry of Law & Justice which recognized the importance of dissemination of information through mediums besides the internet as well. While the government has allowed citizens to submit feedback via post and courier to account for the Digital Divide, there is a need to proactively disseminate information about the consultation through traditional media as well. The Pre-Legislative Consultation Policy also requires the government to provide the public at least 30 days to submit feedback. In the present case, the consultation was publicly announced through a press release on 26 August 2020 and the deadline for submission of feedback is 21 September 2020 despite the prevailing COVID-19 crisis in the country.

Recommendations

In order to address the above mentioned problems in the consultation process, the representation makes the following five demands:

  • Modify or remove the image CAPTCHA present in the online form for submission for feedback using output modes for different types of sensory perception to accommodate different disabilities (visual impairment as well as deaf-blindness). Examples of multimodal options empowering choice to people with varying disabilities include image CAPTCHA, audio CAPTCHA, text-based logic CAPTCHA, SMS OTP CAPTCHA, e-mail OTP with click link to verify CAPTCHA.
  • Provide an email address for submission of feedback, as has been done with previous policy consultations for the Drugs and Clinical Trial Rules 2019, Cosmetic Rules 2018, Personal Data Protection Bill 2019 and Report on Non-Personal Data Governance Framework.
  • Translate and publish the Draft Health Data Management Policy in Hindi at the very least, and in other languages recognized under the Eighth Schedule of the Constitution as far as possible.
  • Widely publicize the consultation through print and electronic media.
  • Re-calculate 30 days for submission of feedback from the date of implementing the above mentioned changes and extend the deadline for the consultation.

Important Documents

  1. Representation dated 08.09.2020 (link)
  2. Delhi High Court Order dated 03.09.2020 (link)