<p><br />The ongoing COVID-19 pandemic has laid bare the deep fault lines in the Indian healthcare system. In days to come, it is expected that there will be a clamour for greater surveillance, need for better tools to target healthcare delivery, and thus, an increase in use of health information data. While data tools will be essential to plug many gaps in healthcare, a guarded watch over data protection and privacy is necessary.</p>.<p>A paper published in the April issue of Bulletin of the World Health Organization titled ‘Ethical challenges of digital health technologies: Aadhaar, India’ highlights the use of Aadhaar in health programs in India which has met with some success while flagging concerns of data use and privacy.</p>.<p>Not just Aadhaar, there are other digital health technologies that are seeing a rise in usage and will continue to do so. Like the example of telemedicine, approved for by Ministry of Health and Family Welfare (MoFHW), to facilitate consultancy with doctors during lockdown period, there will be several that will demand and use individual health data. The need for stronger laws, its implementation and awareness around it is thus vital.</p>.<p>Aadhaar has been linked to various health-related schemes in India. There has been a growing demand to link Aadhaar with Health Management Information Systems (HMIS) that the National Health Mission (NHM) established across states. This merger of digital identification system with digital health records is considered to bring greater efficiency in healthcare delivery in the country.</p>.<p>Maternal and Child Tracking System, which maintains information of pregnant women; Janani Suraksha Yojana, a conditional cash transfer scheme; Revised National Tuberculosis Control Program and National AIDS Control Program are few examples of Aadhaar linked healthcare delivery.</p>.<p>A weak data protection regime is a massive concern in use of Aadhaar for healthcare. This usage has seen many litigations in the country's courts. The Electronic Health Record Standard, 2016, lacked the tooth of law and leaks of Aadhaar details both in private as well as government websites have been reported. However, the Puttuswamy judgement by the Supreme Court, addressing the question of the validity of Aadhaar changed as it made privacy a fundamental right.</p>.<p>The Personal Data Protection Bill tabled in December 2019, which is with the Parliamentary Standing Committee, focuses on setting up a Data Protection Authority. However, the Bill has come under criticism for allowing government agencies to be exempt from measures to ensure privacy of citizens.</p>.<p>In case of Aadhaar linked to healthcare, the insistence of health workers to enrol Aadhaar details to the health information system is commonly heard of. The lack of awareness of one’s rights, the prospect of delay or refusal of benefits often coerce people in subtle ways to part with their data. The challenge faced by low and middle-income countries is enforcing the rule of law.</p>.<p>In India, where public health expenditure is a miniscule 1.28% of its GDP, effective targeting and monitoring of welfare programs are essential components in healthcare delivery. In that regard, accurate data is of utmost importance. The linking of Aadhaar with Health Management Information System (HMIS) can provide such data. Be it Ayushman Bharat or other state-sponsored health schemes, Aadhaar has become a mainstay requirement for access to these insurance and benefit programs.</p>.<p>When India is past Covid-19, greater focus and spending on healthcare may be in order coupled with heightened use of existing and newer data structures. The availability, accuracy, usage and protection of this data should be ensured. It should be seen that the already existing principal-agent problem in healthcare should not get exacerbated.</p>.<p>If concerns of privacy are not addressed it would lead to an epidemic of another sort, a data capture epidemic. Where individuals will be bereft of any protection of their personal data, where companies will mine data for profit, where the state will have a tool to differentiate between a people. Delivery of democracy and healthcare both would be affected if Indians do not demand for a stronger data protection law and its implementation.</p>.<p><em>(Dash teaches biochemistry in a medical school at MAHE, Manipal and Ramasamy is a medical doctor working at Madras Diabetes Research Foundation) </em></p>
<p><br />The ongoing COVID-19 pandemic has laid bare the deep fault lines in the Indian healthcare system. In days to come, it is expected that there will be a clamour for greater surveillance, need for better tools to target healthcare delivery, and thus, an increase in use of health information data. While data tools will be essential to plug many gaps in healthcare, a guarded watch over data protection and privacy is necessary.</p>.<p>A paper published in the April issue of Bulletin of the World Health Organization titled ‘Ethical challenges of digital health technologies: Aadhaar, India’ highlights the use of Aadhaar in health programs in India which has met with some success while flagging concerns of data use and privacy.</p>.<p>Not just Aadhaar, there are other digital health technologies that are seeing a rise in usage and will continue to do so. Like the example of telemedicine, approved for by Ministry of Health and Family Welfare (MoFHW), to facilitate consultancy with doctors during lockdown period, there will be several that will demand and use individual health data. The need for stronger laws, its implementation and awareness around it is thus vital.</p>.<p>Aadhaar has been linked to various health-related schemes in India. There has been a growing demand to link Aadhaar with Health Management Information Systems (HMIS) that the National Health Mission (NHM) established across states. This merger of digital identification system with digital health records is considered to bring greater efficiency in healthcare delivery in the country.</p>.<p>Maternal and Child Tracking System, which maintains information of pregnant women; Janani Suraksha Yojana, a conditional cash transfer scheme; Revised National Tuberculosis Control Program and National AIDS Control Program are few examples of Aadhaar linked healthcare delivery.</p>.<p>A weak data protection regime is a massive concern in use of Aadhaar for healthcare. This usage has seen many litigations in the country's courts. The Electronic Health Record Standard, 2016, lacked the tooth of law and leaks of Aadhaar details both in private as well as government websites have been reported. However, the Puttuswamy judgement by the Supreme Court, addressing the question of the validity of Aadhaar changed as it made privacy a fundamental right.</p>.<p>The Personal Data Protection Bill tabled in December 2019, which is with the Parliamentary Standing Committee, focuses on setting up a Data Protection Authority. However, the Bill has come under criticism for allowing government agencies to be exempt from measures to ensure privacy of citizens.</p>.<p>In case of Aadhaar linked to healthcare, the insistence of health workers to enrol Aadhaar details to the health information system is commonly heard of. The lack of awareness of one’s rights, the prospect of delay or refusal of benefits often coerce people in subtle ways to part with their data. The challenge faced by low and middle-income countries is enforcing the rule of law.</p>.<p>In India, where public health expenditure is a miniscule 1.28% of its GDP, effective targeting and monitoring of welfare programs are essential components in healthcare delivery. In that regard, accurate data is of utmost importance. The linking of Aadhaar with Health Management Information System (HMIS) can provide such data. Be it Ayushman Bharat or other state-sponsored health schemes, Aadhaar has become a mainstay requirement for access to these insurance and benefit programs.</p>.<p>When India is past Covid-19, greater focus and spending on healthcare may be in order coupled with heightened use of existing and newer data structures. The availability, accuracy, usage and protection of this data should be ensured. It should be seen that the already existing principal-agent problem in healthcare should not get exacerbated.</p>.<p>If concerns of privacy are not addressed it would lead to an epidemic of another sort, a data capture epidemic. Where individuals will be bereft of any protection of their personal data, where companies will mine data for profit, where the state will have a tool to differentiate between a people. Delivery of democracy and healthcare both would be affected if Indians do not demand for a stronger data protection law and its implementation.</p>.<p><em>(Dash teaches biochemistry in a medical school at MAHE, Manipal and Ramasamy is a medical doctor working at Madras Diabetes Research Foundation) </em></p>