Researchers argued that collating all data in a national repository for 1.3 billion Indians will be prohibitively expensive and redundant
New Delhi: The Indian Council of Medical Research (ICMR), in association with Harvard University, has proposed a smart health information exchange system for effectively implementing the National Health Protection Mission (NHPM), popularly known as Modicare. The proposal was sent to the ministry of health and family welfare last month, and is under consideration.
The proposal comes against the backdrop of India’s near-universal mobile phone penetration, unique ID systems and evolving privacy and data protection laws.
The proposed model is a centralised, patient-centric, Application Programming Interface (API)–enabled health information system built on global best practices. The exchange can be between software, computer hardware, peripheral devices, humans and combinations of these, through an API. The research paper on which the proposal is based—Reimagining Health Data Exchange: An Application Programming Interface–Enabled Roadmap for India—was published in the July issue of the Journal of Medical Internet Research. The researchers argued that collating all data in a national repository for 1.3 billion Indians will be prohibitively expensive and redundant. It would also offer a single point of failure where security breaches will result in colossal data compromise. They have suggested a blockchain-based information network in which the personal health record underpins a system where free, real-time flow of data is predicated on consent and authorised access.
The architecture would function on blockchain principles as an “open, distributed ledger that can record transactions between two parties efficiently and in a verifiable and permanent way", said Satchit Balsari from Harvard FXB Center for Health and Human Rights, the paper’s author.
“Consider a patient health record (PHR) that could query all nodes in the network to receive periodic updates—from wearables, diary entries, pharmacists, doctors, hospitals, diagnostic labs, imaging facilities and payers. It is possible to map out various permissible pathways through which the data can travel automatically while there may be others through which it cannot pass without the patient’s consent," said Balsari.
The proposed system will have an arrangement of an authorised physician—even a virtual “teledoc"—that would be able to call for her patient’s entire record, either through pre-authorisation, real-time authentication, or waivers in case of emergencies.
“The health information system has the potential to transform healthcare in India. We have to test its sustainability, accessibility issues and patients’ concerns regarding data sharing...How this earlier knowledge can be used in the overall healthcare system in India will have to be decided," said Sanjay Mehendale, the former ICMR additional director general, who was actively involved in the framing of the proposal.
The proposal says diagnostic laboratories should be permitted to send reports to the physician who requests the test but will need authorisation from the patient to send it to any other doctor. Also, a public health agency, duly authorised, should be able to query select de-identified test results across all laboratories in a region of interest, to forecast, monitor, and respond to disease outbreaks.
Attempts at Electronic Health Records (EHR) adoption in India have failed till now because of the untenable combination of very high patient volume and poor usability. “India, while being compliant with global standards, may consider creating a series of minimum datasets for standardisation and interoperability," said Balsari.
“While usually a daunting system to create, the near universal penetration of India’s unique biometric identification program, Aadhaar, offers a solution to this challenge. Aadhaar has been built around the principles of privacy by design, and data minimisation, that are particularly relevant in security-sensitive applications like health care," he said.
Billed as the world’s largest health assurance scheme, aims to provide free health insurance of ₹ 5 lakh per family to nearly 40% of the population—more than 100 million poor and vulnerable families based on the socio economic caste census.