The mission will singularly focus on collection of data of all the citizens on their health status. On the face of it appears very attractive and useful. The government’s contention is that through this data collection’ they will be able to frame policies for the healthcare in the time to come.

That the draft of the National Digital Health Mission (NDHM) was kept in public domain for opinion from the people for only seven days shows government’s reluctance to discuss the issue of such immense importance. It is only after lot of inputs from the health activists that this period was extended by just seven days.

As per the draft health care providers will collect data which will then be shared with the state health authority and the central health authority. As per the medical ethics a patients' health status is a confidential issue and no doctor should share it with anyone unless permitted by the patient himself/herself. By sharing the data with three parties this basic ethical issues has been completely ignored and flouted. In this world of cybercrime where even the prime minister's twitter account was hacked for some time, how can you guarantee that the data will not be leaked.

This is blatant interference with the fundamental right to privacy. India has been debating the Draft Personal Data Protection Bill for the past two years. Under the bill, data relating to health, finance, genetics etc. is considered ‘sensitive personal data’ as its disclosure can cause serious harm to individuals and institutions. Extensive due diligence is required by all stakeholders to ensure that a right balance is created between the public healthcare needs and the legal rights of the citizens, specifically the right of privacy and data protection.

The health care provider will give consent for his/her enrollment in this mission to collect the data. Similarly the consent of the principal, the person/individual, will be necessary to collect data about his/her health status and share it with the state of the central health authorities. There is also provision that the health care provider or the principal will have the right to opt out of this mission. But according to the draft the person’s record isn't erased after they have opted out but it is simply locked. Moreover it cannot be erased for a certain period of time. The government of India doesn't have a good track record with cyber security, and the strategy doesn’t allay one’s concerns.

It is said that the data will be totally confidential with no scope of leakage or sharing with anyone. The job of compiling/managing the data will be given to private setups thus completely negating the security issue. Thus a person's privacy will be completely undermined under this mission. There is no provision of sufficient safeguards against commercial exploitation of Sensitive Personal Data that may be caused by private entities that will be linked to public entities under this system. These include insurers, pharmaceutical companies, and device manufacturers.

There is also provision to collect highly sensitive personal data like financial information such as bank account or credit card or debit card or other payment instrument details; physical, physiological and mental health data; sex life; sexual orientation; medical records and history; biometric data; genetic data; transgender status; intersex status; caste or tribe; and religious or political belief or affiliation. All these have nothing to do with the health of the people but can have negative impact.

The fear that such a data could be used by the state on some pretext or the other is not unfounded. We have the example of Aadhaar Card which is now compulsory to be linked in almost any activity and the state has complete knowledge and control of the activities of the people in our country. Gradually the digital health card will be made compulsory to join the Ayushman Bharat/RSBY/CGHS/ECHS/ESI or any other government sponsored scheme or the insurance by the companies.

Health is a state subject and with this Data Mission, there will be a total infringement of the rights of the states. The contention of the government that this will help us improve the health policies is a joke. The government already knows the problems of health care in our country but it needs political will to sort out those problems. Several health activists/civil society groups and experts have already given their view point on how to improve healthcare system.

This type of exercise may be useful in a health care system which is comprehensive and universal. But in the system like ours, where health care delivery is so much diverse, right from the faith healers, alternative medicine to the system of modern scientific medicine. The medical practitioners vary from small scale sector to corporate sector. For the small scale sector it is extremely difficult to maintain such records in details. Small scale sector which lacks the infrastructure will have to employ new people for the job which will ultimately fall upon the patients to pay the cost. Already our patients are highly burdened with the cost of the health care. The National Health Policy document clearly admits that 6.3 crore people are pushed below poverty line due to out of pocket expenditure on health. With very meager spending by the state sector on public health, the patients are left to remain at the mercy of private sector which accounts for nearly 80% of the health care in our country.

This bill which in no way will help in improving the health needs of our people, rather will be another means to give power for surveillance of the people, should be shelved.
(IPA Service)