All necessary data privacy measures will be put in place to safeguard the confidentiality of sensitive health-related information of individuals under the National Digital Health Mission (NDHM) programme that seeks to provide a unique ID to all citizens to map their medical history, the government has said.
The ambitious NDHM programme was announced by Prime Minister Narendra Modi earlier this month during his Independence Day speech.
As per the draft proposal, everyone enrolled for the mission will get a Health ID free of cost and will have complete control over his or her data.
Any personal data can be collected only on consent from individuals and they will be allowed to revoke their consent to restrict any sharing of personal data.
The government has proposed a framework and a set of minimum standards for data privacy protection to be followed across the board in compliance with applicable laws and regulations.
The National Health Authority (NHA), the central agency responsible for the implementation of Ayushman Bharat Pradhan Mantri Jan Arogya Yojana, which has been mandated to design and roll out NDHM in the country, has released the draft 'Health Data Management Policy' in the public domain.
The document has been put up on the official website of National Digital Health Mission seeking comments and feedback from the public till September 3.
The draft policy mainly seeks to set out a framework for "secure processing of personal and sensitive personal data of individuals" who are a part of the national digital health ecosystem.
Data collected across the National Digital Health Ecosystem (NDHE) will be stored in at the central level, the state or Union Territory level and at the health facility level, by adopting the principle of minimality at each point, according to the document.
The federated structure necessitates the development of a framework that can be utilised throughout the NDHE to safeguard the privacy of confidential health data that has been collected from individuals in India, it stated.
Indu Bhushan, the Chief Executive Officer of NHA said, "The Draft Health Data Management Policy is the maiden step in realizing NDHM's guiding principle of 'Security and Privacy by Design' for the protection of individuals' data privacy."
"It encompasses various aspects of health data like data privacy, consent management, data sharing and protection among others," the officer said.
The provisions of this policy shall apply to the entities involved in the NDHM and those who are a part of the NDHE, that includes all entities and individuals who have been issued an ID under this policy, healthcare professionals, governing bodies of the health ministry, the NHA, relevant professional bodies and regulators.
It would also apply to any healthcare provider who collects, stores and transmits health data in electronic form, insurers, charitable institutions, pharmaceuticals and all individuals, teams, entities who collect or process personal or sensitive data of any individual as part of the NDHE.
The federated design of the NDHE ensures personal data of the data principals will be held at the point of care or at the closest possible location where it was created, with no centralised repository, the draft document said.
As such, data storage shall incorporate privacy control and safeguards right from the foundational levels
Highlighting the significance of the policy and its potential impact, Bhushan said, "The government is working to ensure strong privacy of health data and therefore, we are circulating the Draft Health Data Management Policy of NDHM to increase awareness on the importance of data privacy and instil a privacy-oriented mindset among all stakeholders and participants of the ecosystem."
"I look forward to feedback, suggestions and inputs from experts and members of the general public to help us finalise the policy and make the implementation of the mission stronger and more effective."
The vision of the mission is to create a national digital health ecosystem which enables timely and efficient access to inclusive, affordable, and safe healthcare to all citizens.
The National Health Authority said the NDHM will significantly improve the efficiency, effectiveness, and transparency of health services in India.