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India's digital health mission likely to face privacy issues

By Ruchika Chitravanshi and Sohini Das
October 11, 2021 17:24 IST
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The initiative has the potential to, as PM Modi put it, ‘bring revolutionary changes in India’s health facilities’, but there are several challenges in its implementation, report Ruchika Chitravanshi and Sohini Das.

India’s Ayushman Bharat Digital Mission is an idea whose time has come, but the road ahead looks thorny. The initiative has the potential to, as Prime Minister Narendra Modi put it, 'bring revolutionary changes in India’s health facilities.'

Image used for representational purpose only. Photograph: Getty Images

The challenges are multifold: lack of clarity on a host of issues from data-sharing and compatibility to concerns related to infrastructure and privacy need to be addressed.

 

On the plus side, with the digital health initiative, not only will patients and doctors find it easier to access medical history and get better prognosis, but the most granular data could also drive public health measures down to the village or block level and help identify early trends in diseases.

However, public health experts are not very confident about the pilot that was run in six Union territories as the benchmark for a national roll-out.

The pilot was launched in August 2020 in Chandigarh, Ladakh, Dadra and Nagar Haveli and Daman and Diu, Puducherry, Andaman and Nicobar Islands, and Lakshadweep.

“The piloting may not necessarily reveal all the glitches because they have been done in relatively sterile conditions where the central government has direct control over the administration. When this gets rolled out in larger states, we do not know how well the system will function or the quality of data that will emerge,” said K Srinath Reddy, president, Public Health Foundation of India.

Global examples are also not very encouraging. A mature economy like the UK with a robust national health service has tried unsuccessfully to launch a digital system, making patient records accessible to doctors across the country. In 2011, the programme was shut down since it failed to earn the trust of doctors or even fix data-confidentiality issues.

Public health experts say the digital health mission is a step in the right direction and it can work if the government goes about it systematically.

The head of a leading private hospital said the initiative will have teething troubles and will take at least five years to hit the ground running.

That, however, may not be such a bad thing after all.

“It's important that the technology is tested in four to five different sites and socioeconomic groups to get the spatial and demographic dimensions spread over a year. Health is not like a ration card or a bank credit card. There are seasonal, behavioural, cultural, and fiscal dimensions that go into health-seeking behaviour,” said K Sujatha Rao, former health secretary.

While private hospitals are yet to on-board, they are also not clear how the system will work and whether they will have to make additional investment. Additional costs, say experts, will also mean an increase in the cost of patient care.

Many private hospital chains already have electronic patient record systems in place, portable across their individual network.

“We need to understand what is the portability between our system of data monitoring and the ABDM. What is more important is how this becomes seamless, in terms of portability from a large hospital chain to a private doctor’s clinic somewhere in India. Does the individual doctor also need to invest in accessing the system?” queried Dilip Jose, managing director and chief executive officer, Manipal Hospitals.

The data entry interface, say experts, has to be user-friendly for doctors to be able to key in patient data. This will specially be required if the plan is to rope in accredited social health activist workers and cover the rural health care system.

Amid the need for clarity there are also concerns, mainly around privacy. The government has said that the data will be shared only on a consent basis and not be stored centrally. The health ID is also not a mandatory requirement, so far. But experts are concerned about the steps being taken to ensure the data is protected.

According to sources, the scheme plans to achieve security and privacy ‘by design’ through three building blocks -- consent manager, anonymizer, and privacy operations centre.

The goal of the consent manager would be to ensure the patient is in complete control of the data. The anonymiser takes the data from health datasets, removes all personally identifiable information to protect the privacy, and provides the anonymized data to the seeker.

Legal experts say the national digital health blueprint does not align with the country's privacy principles as recommended by the AP Shah and Justice BN Srikrishna committees and the NDHB looks 'impractical' for implementation without an enforceable data protection law in the country.

“If trust issues are not sorted out, just the use of high-handed force by the government can not only have limited value, but may also end up with more unintended harm if medical records are improperly or incompletely filled,” cautioned Rao.

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Ruchika Chitravanshi and Sohini Das in Delhi
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