There is a new guideline in town and it can have serious ramifications for society as it outlines how personal health data of beneficiaries is to be collected, processed, & used. However, this post is not about the issues with the guidelines, but instead the manner in which they were published and opened up for public consultation.
The ‘Draft Data Sharing Guidelines’ (“draft guidelines”) were published on the official website of Pradhan Mantri Jan Arogya Yojana (PM-JAY) on July 15, 2022, with a submission deadline of July 25, 2022. This gave stakeholders only 11 days to respond to the public consultation. It must also be noted that while the draft guidelines were published on the website on July 15, 2022, they were not notified by the Press Information Bureau (PIB). The only notification appears to be a post dated July 20, 2022, from the National Health Authority’s (NHA) official Twitter handle, inviting comments only 5 days prior to the consultation deadline.
A narrow timeline of 11 days with limited public notification for such a scheme is insufficient and will not be representative of a public consultation process. We sent a joint letter, co-signed by Centre for Health Equity Law and Policy (C-HELP), Privacy Mode and some concerned individuals, addressed to the NHA expressing concern on the short deadline being provided. Through this representation, we requested that the deadline to submit comments be extended beyond July 25, 2022, to provide stakeholders a fresh 30-day period to respond, as recommended by the Pre-Legislative Consultation Policy, 2014. We also requested for the call for comments to be made public prominently and duly notified by the PIB and other official channels, so as to encourage wider public participation.
The deadline for the public consultation, which was July 25, was not extended and no further action has been taken by the concerned authorities on our additional demands. Despite inaction, we continue to reiterate that an extended window to respond to the consultation would permit a larger number of relevant stakeholders to understand the various implications of these guidelines and accordingly send their comments and suggestions.