What is the status of Digital Public Health across the World?
According to the World Health Organisation (WHO), digital health includes the “tools and services that use information and communication technologies (ICT) for purposes connected to health”, which may include improving outcomes of treatments for patients, diagnosing accuracy and closer monitoring of chronic diseases. The adoption of modern technologies in digital healthcare has the potential to improve access to healthcare and health outcomes while also reducing the cost of healthcare and improving efficiency. For instance, telemedicine is proving to be a gamechanger in providing health services to remote places in the country.
Nevertheless, the world’s experimentation with digital health has been mixed. For instance, the UK’s National Health Service has not successfully addressed the issue of data confidentiality. (Source: Denis Campwell, Warnings over NHS data privacy after Stalker doctor shares woman’s records, 14th May 2023, The Guardian). Health data is one of the most profitable and sensitive data sets in the world. A US based firm reported that Chinese attackers allegedly breached the Indian healthcare website which led to a breach of privacy of more than 68 lakh health records. The average cost of a single stolen healthcare record is US $380, which is the highest among all industries. (2017 Cost of Data Breach Study)
India’s Tryst with Digital Public Health Architecture
India envisions digital health for all by 2035. The digital health infrastructure in India is aimed at building an inclusive, accessible, affordable, time-bound healthcare ecosystem in the country. In India, the usage of digital technologies in public health has accelerated since the pandemic. During the pandemic, the digital health technologies in India mainly consisted of the Aarogya Setu App and the CoWIN platform. The Ayushman Bharat Digital Health Mission 2020 aims to incentivise the creation of Ayushman Bharat Health Account ID-linked digital health, which is easily accessible by the patients. It also helps in easy integration with the beneficiaries database for availing various benefits under the government aided health schemes. The digitisation of the data also helps in plugging the leakages and possibilities of corruption in the healthcare management system.
The Ayushman Bharat Digital Mission is one of the world’s largest health databases in the world, with over 243 million health records and IDs. The government aims to build a digital health ecosystem in India using it Data suggests, the majority of patients (60%) and physicians (65%) in India are inclined towards digital platforms over in person consultations. India witnesses 2 to 3 lakh telemedicine consultations per day yet it spends only a miniscule amount of 1.3% of the GDP on healthcare.
The NITI Aayog proposed the National Digital Health Blueprint (“NDHB”) in January 2020, establishing the framework for a future health system that aimed to create a framework for the National Digital Health Ecosystem and be implemented through the NDHM. Centralised digital health records were first sought to be adopted in 2018 for the Ayushman Bharat-Pradhan Mantri Jan Arogya Yojana (AB-PMJAY) under the NHA. However, the government of India expanded the scope of digitization of health records to a national level. According to data from the Ministry of Health and Family Welfare as of February 2023, over 57% of Sanjeevani (National Telemedicine Service of India) patients are women and 12% of the beneficiaries are senior citizens.
Intersection between Privacy and Public Health in India; What are the digital health rights in India?
Public Health is in the state list of the Indian Constitution. Maintaining a balance between the potential benefits of healthcare technologies and patient privacy is a challenging task. The digital health rights of the patient are all comprehensive which includes various aspects of informed consent, data anonymization, lawful data sharing practices. The Human Rights law mandates the digital initiatives include respect for the right to confidentiality, privacy, autonomy, equity and non-discrimination. The 2017 Supreme Court in its Right to Privacy verdict, emphasised that digitalisation should be embedded in a rights-based legal framework which protects the right to autonomy and privacy from abuse by state and non-state actors.
The data breaches can also lead to insurance fraud through the utilisation of the medical information. The leaked health care data also exposes individuals' data on their physical, physiological, sexual orientation, medical records and medical history. The unencrypted medical data might also potentially expose the patient’s bank account details. The number of cyber-attacks in India rose drastically from 41,378 (2017) to 1,402,809 (2021). (Source: CERT-In). In 2019, India experienced a breach of over 6.8 million health records of patients and doctors. This repeated attack erodes public trust in the healthcare system. Secondly, any large private insurance company can potentially use sophisticated algorithms across the digital healthcare databases for constructing the risk-profiles for people while also making access to affordable insurance difficult. Lastly, surveillance by state and non-state actors and concerns regarding ethical usage of the digital health technologies. For example, the mandatory linkage of the Aadhaar and Digital Health ID raises serious concerns about privacy.
The challenge of Privacy and Security of Digital Health Data
Firstly, this system of linkage of Aadhaar with health ID had been declared by the government as voluntary; however, this system has been made de-facto mandatory due to its integration with the various government health schemes, including the Ayushman Bharat Scheme. About 40% of the current 328 million Ayushman Bharat Health Account IDs originated from the CoWIN platforms. The National Health Authority has published a Health Data Management Policy which states a commitment to “privacy by design” laying down the requirements related to the right to access and erasure of records and storage of personal data based on user consent. However, it is due to the lack of statutory legitimacy of the National Health Authority itself. The study also found that only 27 of the 72 initiatives had privacy policies in place; however, there was no study or policy review to demonstrate the privacy concerns.
Examples include New Delhi’s AIIMS have been at the forefront of India’s digital health initiatives. Recently, it has aimed at integration of the Health Ministry’s new universal health ID Scheme- the Ayushman Bharat Health Account IDs. The hospital’s digital health systems have come to a halt due to a major cyber attack which reportedly led to the compromise of the data of 30 to 40 million individuals. The data comprised patient registration, medical history and prescriptions, and one of the gravest implications was the misuse of the data including the stigma attached to certain health issues. Till date, more than five AIIMS servers have been targeted so far. (The Wire Staff, 2022)
Secondly, there are various loopholes in India’s Digital Personal Data Infrastructure. Presently, hospitals in India fail to keep records of basic parameters, such as the date and time of consultation and diagnosis. The Digital Information Security in Healthcare Act (DISHA) is aimed at providing healthcare data privacy, security, confidentiality and standardisation. The government also contemplates the setting up of a National Electronic Health Authority at the national level and the State Electronic Health Authority at the State levels. The NHP (National Health Policy) has recommended the establishment of a Federated National Health Information Architecture to link public and private health providers consistent with Metadata and Data Standards (MDDS) and EHR and a National Health Information Network by 2025.
The Ayushman Bharat Digital Mission aims to provide every citizen with a unique digital health ID. The beneficiary will also set up a Personal Health Records (PHR) for addressing the issue of consent. The challenges include the huge challenge of data migration, and inter-state transfers are facing multiple errors and shortcomings with regard to data security. The government has stated that the data stored under the ABHA ID is encrypted under the provisions of the Digital Protection of Data and Privacy Act; however, there are no specific guidelines for the same. (Perappadan, 2021). The Digital Personal Data Protection Act does not include digital health data as sensitive information. The act has also removed the distinction between personal and sensitive personal data. These entities which process the personal data will no longer be required to have regular audits. India is yet to have a framework for the legal data protection policy. The Digital Personal Data Protection Bill, 2022 also does away with the special category of sensitive personal data which includes health data. The draft bill introduces the concept of “deemed consent” which recognises medical emergencies as situations wherein the data processing can take place without the individual consent. (Panjiar & Waghre, 2022)
The National Digital Health Mission’s Health Data Management Policy has come under severe criticism. Firstly, the Draft Policy is restricted in its compliance to “relevant standards” and not “international standards.” The Ministry of Health and Family Welfare is not entrusted with the ratification of the relevant standards. Secondly, the new exceptions in the healthcare policy also include the interest of public health and this has not been defined in a proper manner which can potentially lead to arbitrariness. Another change is that a data principal may request the creation of a health ID at no cost while the latest version reads that “ABHA may be created at no cost,” which essentially takes away from the patient whether to decide whether to get an ABHA number. Thirdly, the current health data privacy framework is not adequate, as the Information Technology Rules 2011 are not applicable to the government authorities. Under HIPAA, the United States has strict penalties in place for disclosing the health information; however, in India, the mere penalty is the suspension or cancellation of the registration of the individual entity and termination of the service contracts (page 35 of the Draft Policy).
Researchers have identified that 87% of the US population in the United States can be identified based on three simple characteristics of ZIP, gender and data of birth, and in digital health records in India, these simple features are identified, which does not keep the data anonymous (IFF). The Digital Information Security in Healthcare Act (“DISHA”) in 2018, came under fire as it required sensitive personal data, including medical records, to be processed with the explicit consent of the data owner, also putting in place data localization requirements, by which all data fiduciaries must store at least one copy of this personal data in a data centre located in India (Nishith Desai Associates, 2020). The government would have broad powers to access sensitive healthcare information. (Ray, 2020)
Sociological Analysis of the impact of Digital Health Mission
The digital health proliferation can also potentially lead to exacerbating existing inequalities on account of access to digital health care services. There is limited legal scholarship on digital health in India. (Jain, 2023) The digitalisation of health records can lead to the phenomenon of ‘Intervention-Generated Inequality’ (IGI) where there are issues of equity and equality. The issues overlap with the existing hierarchical divisions in the Indian Society like class, caste, gender and religion, wherein the marginalised are deprived of a healthy life. (data on this, charts please). (Sharma & Shukla, 2023). Some of the major aspects of the great digital divide are as follows:
The Rural-Urban Divide: According to Oxfam’s The India Inequality Report 2022, social, political, and environmental factors determine who goes online and for how long and whoo does not. For example, only 38% of the households in India are digitally literate and only 31% of the rural population uses the internet as compared to 67% of the urban population. E-Sanjeevani is a telemedicine platform which aims to provide quality health care in the rural areas. The maintenance of the electronic health records requires stable access to the internet. However, according to TRAI, the accessibility of the internet among rural subscribers is 27.57 out of a hundred people. So, the issue of internet penetration is a huge challenge for wide usage of digital health technologies. (Moinuddin, n.d.)
Lack of regard for the Socio-Cultural Context in Digital Healthcare: The use of AI in healthcare service systems can potentially lead to biases and increased surveillance of Muslims, Indigenous Adivasis, lower-caste Dalits, transgender people and other marginalised groups. In the Indian context, the importance of informed consent can perhaps be most clearly seen in the administration of the human papilloma virus (HPV) vaccine to Adivasi (Indigenous) girls in Andhra Pradesh and Gujarat in 2007. After the deaths of four indigenous girls, the administration of the vaccine immediately stopped. The girls and their caretakers were not given information to understand the purpose of the vaccine or its side effects (Sarojini & Deepa, 2013) For example, frontline health workers in Karnataka were supported by the assets of digital health, such as engaging, video-based health education material. However, they were hindered by the lack of infrastructure, as digital initiatives have overlooked broader socio-cultural practices that influence the way frontline workers operate, and the digital framework has not adapted to their needs. (Ismail & Kumar, 2019) Lastly, investment in digital healthcare interventions targeting marginalised persons that are culturally sensitive, respectful of traditional methods, and geared towards long term capacity-building, support and robust monitoring and evaluation can have a long lasting impact on the comparatively poorer health. (Jain et al., 2022)
Exclusion of Differently-abled Citizens in India’s Digital Health Mission: In a petition by a notable disability rights activist, Satendra Singh, it was highlighted how the existing digital healthcare process excludes people with disabilities, non-English speakers and people without internet access.
Senior citizens in India’s Digital Health Mission: The penetration of smartphones is only 5% for those who are 55 years and older. (Singh & B M, 2024). According to a report by the Union Ministry of Labour, 38% of the households are digitally literate. According to a UN Report, there were 14.9% crore people aged 60 years and above in 2022 and by 2050, the share of the older people would reach up to 20.8% of the total population. There is a need for bringing the senior citizens under the cover of the Ayushmann Digital Health Mission and also expanding the ‘household’ criteria to individuals as well. There are currently no protocols in place for providing confidentiality of sensitive data, such as pregnancy or abortion. There needs to be a piloted impact study on the impact of e-healthcare on women and senior citizens in the country, as these sections have largely been excluded from the healthcare system.
Policy Recommendations
India needs to ensure that sufficient infrastructure, personnel, and facilities are available to maximise access to affordable, user-friendly, and streamlined digital healthcare. There are two fundamental components of digital health rights in India, first is the right to informed consent and the medical ethics in digital healthcare. The right to autonomy in making health decisions derives from the fundamental human right to liberty and is intrinsically connected with many fundamental human rights, such as liberty, dignity, privacy, security of the person, and bodily integrity.
Need for a Comprehensive Digital Health Data Privacy Bill: Need for overhauling India’s cybersecurity framework: India’s National Cybersecurity Policy has not been updated since 2013. The global digital strategy states that health data should be brought under the classification of sensitive personal data, which requires extra security. There is a need to implement data security audits. Need for a proper legal framework for convicting the accused in the theft of digital health cases. Secondly, there is a need for thorough evaluation of health system preparedness and the establishment of a public grievance resolution portal. Thirdly, there is a need for a graded system of penalties for various types of violations with regard to the digital health data. (Tejasi Panjiar & Waghre, 2022). Secondly, transparency, data confidentiality, and cyber security must be addressed in the guidelines concerning the health data of individuals to be used by medical software (third parties). (Jain, 2023)
Designing a People-Centric Digital Health Ecosystem: Individuals should have absolute control and rights over their health data, except in cases of few emergencies. The patients must be kept abreast of all the relevant information with regard to the limits of the collection, processing and sharing of their own health data. The specific consent should also be taken into account at various stages of data processing and sharing. There must also be a provision for the right to correction and erasure of digital health data. The handling of the data must also include proper compliance with the international standards. Finally, the access to data should be limited to public health research purposes and the prohibition of sharing such data with insurance and other commercial purposes. Need for training the ASHA workers in tele-medicine to work the digital initiatives at the grassroot levels.
Role-based Access to Digital Health Data: The healthcare digital infrastructure should be designed based on role-based access, which would restrict data access. However, a rights-based approach also suffers from limitations as the concept of rights is essentially contextualised within a universal, ‘Western’ framework, and the application of this framework without due consideration to the socio-economic, cultural, and political specificities is likely to reproduce existing hierarchies rather than dismantle them. Most importantly, there is a need for digital healthcare interventions to account for the intersection between caste, indigenous communities, and healthcare through the application of the five dimensions of access to healthcare, namely approachability, acceptability, availability and accommodation, affordability, and appropriateness. (Jain, 2023)
Role of Health-Tech Startups: There are potential opportunities for health-tech startups for adoption of data-driven technologies and AI in healthcare. It is also recommended that the NDHM provide the base for an initial seed fund for further supporting the health tech startups and tax reliefs for such startups. (Prathik Desai, 2024) Secondly, the startups can act as enablers and operators between ABDM Infrastructure and the patients through the development of a user-friendly interface, helping people book tests and providing 24*7 help. One such successful example is the e-mitra platform in Rajasthan.
Digital Infrastructure Building: Need for a strong and appropriate governance framework and provision of data security and other technical data operations training for the healthcare workers. The health sector specific training can be one of the ways to advance digital health in India. BharatNet and the Ayushmann Digital Health Mission can be worked together to bridge the digital divide in rural areas. The development of accessible healthcare technology would require adequate trust in technology.
There is a need for a proper mechanism in place for better interoperability and research on digital health data which would facilitate medical research, population health studies and the development of innovative treatments which would lead to better healthcare outcomes in public health.
Conclusion
Digital health can potentially advance universal healthcare in India. Digital health can be a game changer which would lead to improved disease prevention, improvement in the diagnosis accuracy. There is a need for greater stakeholder consultations among the various sections of the digital health care framework in the country. There needs to be a comprehensive study to understand the effectiveness of the digital health schemes in India and also to update them from time to time. India needs to implement these policy recommendations for building a suitable model of digital healthcare in India.
By Sourishree Ghosh
Sourishree Ghosh is currently pursuing her undergraduate studies in political science from Jadavpur University, Kolkata. Her interests lie in India's Foreign Policy, China Studies and the Global South Discourse of IR. She is always up for any talk on international relations, public policy and sustainability.
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amazing piece of writing❤️