The National Health Authority (NHA) recently released its Data Sharing Guidelines draft for PM-JAY. The NHA invited responses and comments from the public and as such IT for Change duly sent in its recommendations. While the NHA's proposal is certainly a step in the right direction, there are a few key points that we feel needs addressing.
The NHA's draft states that it will protect the personal health data of individuals but there is little clarity on how this would work in a practical sense. The lack of personal data protection legislation at the national level means that the proposals put forward in the NHA's draft would be difficult to properly implement.
Without an overarching law, there are also concerns regarding the utility of health data for legitimate secondary use cases such 'emergency responses' and 'public health research'. We have pointed the NHA towards the European Health Data Space proposal that was released earlier this year in this regard.
Read the entire submission here.