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India in Transition

Data Privacy and Digitization of Health in India

Vivek N. D.
December 7, 2020

On August 15, 2020, on the occasion of India’s 74th Independence Day, Prime Minister Narendra Modi announced the launch of the National Digital Health Mission (NDHM) with the promise that it will revolutionize the Indian health sector. The NDHM, according to the Indian government, is the first step in strengthening India’s health system and moving it toward the United Nations Sustainable Development Goal 3: achieving universal health coverage. It aims to digitize the health records of all individuals—clinical tests, illnesses, medical prescriptions, and reports—under one health identification. The “womb to tomb” health identity, as proposed by the Indian government while aiming to improve efficiency in patient care and ease of access to health records, has also raised fears of it being used as a mass surveillance tool. 

Surveillance by the state is a major concern in India, underscored by the tabling in Parliament of the first ever national legal framework for personal data protection, the Personal Data Protection Bill, 2019 in December last year. Legislation concerning health policy has always been a thorny issue in center-state relations within India’s federal system. The central Ministry of Health and Family Welfare has regulatory power over a majority of health policy decisions. It is, however, not directly involved in healthcare delivery, which is primarily provided by state governments. Under the current privacy rules, the government (at any level) is prohibited from collecting health records of individuals and can access them only through the registry of the court of law. In August 2017, a Supreme Court ruling upheld the Right to Privacy as a Fundamental Right of citizens under Article 21 of the Indian Constitution. However, the law is still quite unclear regarding data privacy.

The collection and storage of sensitive health data, without sufficient legal safeguards on who accesses such information and other forms of misuse of data, can also lead to a premature end to the privacy debate with some of the key provisions in the National Digital Health Blueprint overruling the proposed data protection bill. A group of public health researchers who studied the impact of linking health schemes with the national identity number, Aadhar, concluded that while efficiencies of incentivizing use of health care services improved, there were a number of serious ethical challenges including interruptions in the treatment of patients with tuberculosis and acquired immunodeficiency syndrome as patients feared a breach of their confidentiality. They also suggest that the process of digitization of health records in developing countries must adhere to strict legal regulation that protects citizens’ data and prevents information technology companies from exploiting such databases for profit.        

In line with Modi’s announcement, a draft of the Health Data Policy Management was made available to the public on August 26, 2020 for discussion and deliberation among various stakeholders in the health system. Despite India’s pre-legislative policy consultation process requiring a minimum one-month period to solicit feedback, the NHA invited suggestions from the public initially only for a week. Facing criticism for providing a narrow window for consultations during a public healthcare crisis, the deadline was then extended to September 10 and finally September 21. Many provisions of the draft, especially on data security, lack of a consultative process with stakeholders, and mandatory registration of individuals (patients and doctors) without securing their voluntary consent have been questioned by public health and legal experts. Healthcare representative bodies, including the nodal agency for practitioners of allopathic medicine, Indian Medical Association, have cited cases of medical professionals in government run hospitals being compelled to register with constant reminders from superiors and threats of professional action for not registering with the NDHM. Furthermore, statutory bodies such as the National Medical Council, Insurance Regulatory Development Authority of India, and Pharmacy Council of India—key agencies in linking the various elements of the health system—are unclear of their own regulatory roles as well as the scope of participation of private enterprises in recording and accessing the data.  

The regulatory role of the state aside, the National Information Infrastructure, a nodal agency under the Ministry of Electronics and Information Technology, is in the process of operationalizing a high-speed broadband highway (network and cloud infrastructure) to improve internet penetration across India, especially mobile connectivity in rural and remote areas. India also lags behind on most parameters in terms of health infrastructure and human resources. A systematic review of the literature on adoption of mHealth interventions in strengthening the Indian health system highlighted that the two most studied aspects are poor service delivery and the shortage of trained health workforce. The ratio of doctors to population is one doctor for every 1,445 individuals, much lower than the World Health Organization’s recommended one doctor per 1,000 individuals. Rural areas are further neglected with nearly three-quarters of the country’s qualified doctors and nurses practicing in the urban private sector. Of the proposed 150,000 rural healthcare centers that have been promised to be fully functional and staffed with qualified and trained personnel by 2022, only 38,549 are currently functioning with adequate resources, underlining the vast inequities that persist in access to quality healthcare. Studies have shown that in more than 80 percent of cases of Indians dwelling in slums and rural areas, the first instance of care is sought through informal private health providers.   

Access to quality healthcare remains among the primary concerns for India’s health system.  The NDHM promises to make various processes in accessing health care easier and more efficient. Diagnostics, essential in the test-identify-treat method, have proven to be a complex system for most patients to navigate. This often leads to cases of self-testing or self-treatment practices which keep the test-identify-treat loop open. Under the new digital mission, policymakers, test developers, and health administrations need to ensure that patients have access to easy-to-follow point-of-care tests.

The nature of India’s large informal health sector also leads to the question—how will the digitization effort lead to tangible benefits to patients? The complexity of bringing the entire health system under a single-umbrella digital architecture has left many developed countries—including the US and UK—reeling with mounting expenses in running the digital health systems, technical difficulties, and exclusion of various sections of the population from accessing good quality healthcare at economic costs. The NHA will benefit from understanding ground realities of individuals accessing healthcare by integrating the digitization process in consensus with other stakeholders in the process, especially the one million strong, all-female army of Accredited Social Health Activists (ASHAs)/community health workers who form the backbone of the Indian health system.        

The implementation of the NDHM across India will be the first attempt by a developing country to digitize health data on a national scale and could provide a template to develop best practices for other countries to adopt. Health-tech, powered by artificial intelligence and machine learning, is also a strong component of the transformations envisioned under the Fourth Industrial Revolution. With ramifications for both industry and society (in a world which is getting sicker and older), the NDHM, in tandem with the Digital India and Make in India missions, might even be policy levers to influence decision-making in global health and sharpen India’s competitiveness ranking in technology development.

Vivek N. D. is an Assistant Professor at the School of Liberal Arts and Human Sciences, AURO University, Surat, India where he teaches Political Science and Public Policy. He is also a Ph.D. candidate at the University of Hyderabad, India. His thesis is on global health governance and the role of non-state actors in the politics of health governance and policy.

India in Transition (IiT) is published by the Center for the Advanced Study of India (CASI) of the University of Pennsylvania. All viewpoints, positions, and conclusions expressed in IiT are solely those of the author(s) and not specifically those of CASI.

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