82% back Centre's Health ID initiative but wary of data-sharing

New Delhi: A whopping 82 per cent people support the Central Government's new National Health ID, provided it only seeks and stores health-related information and not sensitive personal details such as banking information, sex life, caste, religion, political affiliations, etc. The National Digital Health Mission was announced by Prime Minister Narendra Modi in his Independence Day speech. The ambitious initiative will see the creation of health IDs for every citizen that will enable storing personal medical records and disease history electronically.

The draft of the policy was released on August 26 with a week stipulated for public feedback. However, on September 1, the government extended the public feedback deadline till September 10. On the basis of 34,000 responses from citizens residing in 272 districts of India, 'Local Circles' attempted to bring out what the masses feel about the idea of creating a citizen digital health id.

In the first question, citizens were asked about their views on the creation of such a digital health id. Over 23 per cent said it should be created as it could help in faster access to healthcare, while 18 per cent said it should not be created as it could lead to personal sensitive data getting compromised. As many as 59 per cent said it should be created but data sought should be restricted to just health information. The results of the poll show that 82 per cent support digital health id creation but believe sensitive personal details should not be sought.

The main objective of the draft policy has been stated as providing guidance and creating a framework for secure processing of personal data of individuals who are a part of the national digital health ecosystem. NHA has earlier rolled out schemes like Ayushman Bharat - Pradhan Mantri Jan Arogya Yojna, which gave health benefits to millions of Indians. The Government in its draft National Health Data Management Policy which proposes to create a digital health id for citizens will be storing the data selectively at three levels -- central, state or UT -- and at the health facility level.

Citizens were asked how they feel this should be done. 11 per cent said storage should be at central, state and health facility levels is fine, while 21 per cent said storage should only be at central level and accessed by state and health facility after the citizen's authorisation. At least 10 per cent said storage should be at central and state levels and access by health facility after their authorisation, and 57 per cent said it should only be done for health information and it should be stored only at central level with authorisation needed for use by health facility.

This shows that the majority want the digital health id to have just health information with storage only at the central level and authorisation-based access for state government and health facilities. The key concern among people with information storage at state level or at a health facility level is the risk of the information getting compromised. People prefer that their private sensitive information be deleted post usage by these entities.

So, while people are okay with their state government and the different health facilities accessing their information upon their authorisation, they do not want this information stored in private hospital computers or in state government and district health facilities. In the next question, citizens were asked what information they approved to be stored in their digital health id under the National Health Data Management policy. At least 79 per cent people approved storage of biometric, health and medical records data only. The remaining 21 per cent were more open and willing to share additional personal sensitive information of different types.

With regards to the digital health id creation per the draft National Health Data Management policy, a data fiduciary may make aggregate or anonymised data of people available for the purpose of research, promotion of diagnostic solutions to other external agencies. Citizens were asked if they approve of such data sharing. 48 per cent responded in a clear 'no' while 45 per cent answered in a 'yes'. Six per cent were unsure about it. People seem to be almost divided when it comes to permitting usage of their anonymised health data for purposes of research, diagnostic solution promotion to external agencies, etc.

The policy draft outlines how this data would be collected, processed, stored and shared. This indicates that one in two citizens is not willing to give their consent to anonymised sharing of their data for research or to external agencies outside the Government.

The Health Data Management Policy adopts the Personal Data Protection Bill, 2019, which has already been presented in the Parliament, as an anchor. The Ministry of Electronics and Information Technology also released the National Personal Data Protection Policy draft for public comments in July 2020 which focuses on anonymised and aggregate data of Indians.

The Digital Health ID will have to sync itself with both these policies to ensure that the citizens data stays protected and only information that is absolutely essential for availing health services is sought for storage.

The biggest benefit of such a digital id to citizens can be in the current Covid-19 pandemic situations where many from rural areas and small towns are coming to metros and tier 1 and 2 cities to get treatment.

A digital health id could easily make available to the treating physician all their details on fingertips and the patient can even be directed to the most optimal health facility based on their condition and location.

On the flip side, if there are not enough safeguards and such information gets into the wrong hands, an individual could face serious consequences financially and socially, get rejected from a job based on their health condition or find it difficult to rent a home.