Unique ID, data privacy give strength to Centre's digital health mission

Covid-19 has brought lessons aplenty for the world, among which is the need to quickly access and analyse macro data. Digitised health records could help collate and analyse data in a more comprehensive and ‘real time’ manner for policymaking.

With this objective, the Centre has rolled out the National Digital Health Mission (NDHM), which proposes a unique health ID for each citizen. The announcement is expected on August 15 by the Prime Minister.

“Let’s say the NDHM gets implemented. Imagine, then, how quickly policymakers could access and assess data related to responsiveness of patients to a particular treatment. We will know in real time, the number of patients put on any drug (for example remdesivir), how many recovered or died, the age and gender profiles of these patients, and also how people with co-morbidities responded to treatment,” said the chief of a private hospital, who was privy to discussions for the National Digital Health Blueprint.

This could potentially reduce the long wait for data from clinical trials when a pandemic is raging and experimental (off-label) therapies are being tried.

The NDHM has been planned as a complete digital health ecosystem that will comprise unique health IDs (voluntary participation), digitised personal health records, and a registry for doctors, hospitals, diagnostic labs, and pharmacies. There will be four key building blocks — the health ID (which government officials say will resemble a UPI ID instead of an Aadhaar-style number), personal health records (PHR), Digi-Doctor, and registry for health facilities.

“Once the legal and regulatory structure of e-pharmacies are finalised, they will be a part of this ecosystem,” said a senior government official. The NDHM will not be mandatory but the government feels the sheer utility of being part of the ecosystem would ensure on-boarding.  

But the USP of scheme will be the importance of consent by an individual to allow access to his PHR. “If someone wants to access my data, the organisation or individual (registered with NDHM) has to seek my permission. I will get a notification — it could be an app notification, an OTP by way of an SMS, or an interactive voice response,” the official explained.

An individual may choose to provide access to selective documents, or make the access time-bound. The person may revoke access at any point. There will be a concept of delegated consent for the elderly, children, or unconscious patients.

Data will be encrypted and not pulled into any central server, government officials have assured.

The National Health Authority, led by senior bureaucrat Indu Bhushan, will be responsible for implementation.

“India being an IT powerhouse, we should have had this long back. We are trying to implement the NDHM as think-big, start-small and scale-fast. We will start with some pilots and based on the learnings, scale it up,” said Bhushan. He added that the major challenge would be “change management”. Hospitals and doctors are used to doing things in a particular way.

Bhushan clarified that Ayushman Bharat is different. The NDHM is for every Indian. However, he said that the PMJAY had electronic medical records for 10 million people, and over 23,000 hospitals on board. These could, perhaps, be brought on board and there could be some convergence here in terms of facilitating or giving ‘initial momentum’ to the NDHM.

With personal health records collated, patients can walk into a health facility without historical documents. Diagnosis becomes easier for a physician who now access historical records. Any need for a follow-up test can be customised or avoided, if not necessary.

Hospitals will have higher inter-operability. The government will have access to anonymous and macro-level data like immunisation, infant mortality, childbirth, and chronic diseases like diabetes, hypertension, and nutrition that will help policymakers target their initiatives.  

Hospitals and e-pharmacies are also upbeat on the NDHM. Terming it a ‘progressive step’, Joy Chakraborty — chief operating officer of PD Hinduja Hospital in Mumbai and chair (healthcare) of CII (west) — said: “To bring all providers and beneficiaries on a single platform will not only benefit them by way of early diagnosis — especially for long-term treatment for chronic care — but is also a win-win for all stakeholders.”

“Let’s say a patient arrives in emergency without health records. Doctors can easily access the medical history through the unique ID,” he added.

Citizens will be in full control of their data, said officials. The scheme plans to achieve this through three building blocks — Consent Manager, Anonymizer, and Privacy Operations Centre (POC) — according to the final version of the blueprint, released by the Ministry of Health and Family Welfare.

The goal of the Consent Manager is to ensure the citizen/patient is in complete control of the data collected and with whom it is shared. The Anonymizer collates matter from health data sets, removes all personally identifiable information and provides anonymised data to the seeker.

The POC will monitor all access to private data, review consent artefacts, audit services for privacy compliance, and evangelise privacy principles on which the ecosystem will be built on.

Bhushan said there were no plans to make it a marketplace or fee-based service. “We will be conservative with data and cautious regarding use for commercial purposes,” he added.