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UN Questionnaire on Digital Innovation, Technologies and Right to Health

Posted by Pahlavi and Shweta Mohandas at Dec 31, 2020 12:00 AM |
The Centre for Internet & Society (CIS) contributed to the questionnaire put out by the Office of the United Nations High Commissioner for Human Rights, on digital innovation, technologies and the right to health. The responses were authored by Pahlavi and Shweta Mohandas, and edited by Indumathi Manohar.



1. What are benefits of increased use of digital technologies in the planning and delivery of health information, services and care? Consider the use of digital technologies for healthcare services, the collection and use of health-related data, the rise of social media and mobile phones, and the use of artificial intelligence specifically to plan and deliver healthcare. Please share examples of how such technologies benefited specific groups. How have digital technologies contributed to availability, accessibility, acceptability and quality of healthcare? Has the use of artificial intelligence improved access to health information, services and care? Please comment on existing or emerging biases in health information, services and care.

The use of digital technologies and forms of digital health interventions has seen an increase in interest from governments, industries, as well as individuals since the beginning of the pandemic. The lockdowns, and other social distancing measures created a push towards telemedicine and online consultations. Digital health services provide a number of people the opportunity to seek medical help without traveling, which particularly help people with accessibility needs, the elderly, and anyone else that has difficulty in movement.1 Telemedicine can also help meet the challenges of healthcare delivery to rural and remote areas, in addition to serving as a means of training and education.2

The pandemic brought about a push towards telehealth and telemedicine and the telemedicine market has been reported to touch $5.4 Bn by 2025,3 with a number of applications working to make it more accessible to people in India. With respect to AI there has been some adoption of AI in India to help the most vulnerable group of people. For example: Microsoft has teamed up with the Government of Telangana to use cloud-based analytics for the Rashtriya Bal Swasthya Karyakram program by adopting MINE (Microsoft Intelligent Network for Eyecare), an AI platform to reduce avoidable blindness in children.4 Similarly Philips Innovation Campus (PIC) in Bengaluru, Karnataka is harnessing technology to make solutions for TB detection from chest x-rays, and a software solution (Mobile Obstetrics Monitoring) to identify and manage high-risk pregnancies.5 More recently IWill by ePsyClinic, a mental-health platform in India, has received a grant from Microsoft's 'AI for Accessibility' program to accelerate the building of a Hindi-based AI Mental Health conversational program.6

However the use of digital technologies and online medical interventions has also widened the increasing gap between those who can afford a smart phone and internet and those who cannot. A digital-only health intervention also results in excluding a wide number of people who do not have a smartphone, for example the Indian contact-tracing app, Aarogya Setu, which was a mandatory download to access public places during the lockdown was initially only available via a smartphone. Additionally, the app initially was not compatible with screen readers.7 The disparities in digital access and infrastructure is not limited to individuals— a report by the Ministry of Electronics and Information Technology India highlighted that the government hospitals and dispensaries have very little ICT infrastructure with only some major public hospitals having computers and connectivity.8

As stated above, the adoption of digital health technologies is not uniform around the world, and the people who are not able to access these technologies missed being included in the data that is being collected by these systems, further excluding from the data set which might be used to train future interventions. In the same light, digital technologies such as AI based screening are based on historical data that have been proved to contain biases against

marginalised communities. Continuing to use these systems without addressing these biases and or including more diverse dataset results in the same people being marginalised and misdiagnosed further. For example, safety apps where data is provided by limited people could identify Dalit and Muslim areas as unsafe, reflecting the prejudices of the app’s middleand upper-class users.9 While this has not been revealed in healthcare apps, the growing use of CCTVs and subsequent use of facial recognition in only certain pockets of the city reveal the historical biases in the police system that lead to targeted surveillance.10

2. How has the rise of web platforms and social media increased access to health information and services, or conversely, increased risk of misdiagnosis or other harms? Please share examples of ways in which social media and web platforms facilitated innovation in access to evidence-based health information and services, or created new threats of discrimination, mental health harms, or online or offline violence.

Social media platforms have helped people immensely during the pandemic. For example, when people reached out to strangers for help for hospital beds and oxygen. However, the benefits of such were limited to people who were on social media and had the reach and networks to share such information.11Furthermore, social media and messaging apps such as Whatsapp also led to the spread of misinformation during the pandemic. For example a Whatsapp message claiming to be from the Ministry of Aayush which permitted homeopathy doctors to treat Covid19 spread significantly, leading to the official government channels clarifying that it is fake and cautioning people against it.12 It was also noted that at times when women shared requests for beds or oxygen during covid on social media, they were faced with fake calls, stalking and trolling on social media, making it harder for them to seek help.

3. How has the right to privacy been impacted by the use of digital technologies for health? Please share examples of ways in which data gathered from digital technologies have been used by States, commercial entities or other third parties to either benefit or harm groups regarding the right to health.

In 2006, the National e-Governance Plan (NeGP) was approved by the Indian State wherein a massive infrastructure was developed to reach the remotest corners and facilitate easy access of government services efficiently at affordable costs.13There has been a paradigm shift in the Indian state’s governance strategy, with severe implications for privacy and inclusion. However, this shift has been undertaken primarily through a series of administrative orders with no real legislative mandate and minimal judicial oversight. This digitisation began with services such as taxation, land record, passport details, but it soon extended its ambit, and it now covers most services for which the citizen is dependent upon the state— the latest being digital health.

In the Indian context, there have been a number of policies that have been published which dealt with digital health. The policies looked at creating a digital health ID, digitisation of health data, and the management of health data. However these policies are being introduced without the existence of a comprehensive data protection legislation. While there are certain safeguards mentioned in each policy, without privacy and data protection legislation it is impossible to ensure compliance and the rights of the data owners. This issue became a reality when during the vaccination for Covid, some vaccination centres created Health ID for people without their consent.14

4. What are current strengths or weaknesses of digital health governance at national, regional and global levels? Please provide examples of laws, regulations or other safeguards that has been put in place to protect and fulfill the rights to health, privacy, and confidentiality within the use of digital technologies for health? Do restrictive laws or law enforcement create any specific challenges for persons using digital technologies to access health information or services?

Digitisation of the healthcare system in India had started prior to the pandemic. However, the pandemic also saw a slew of digitisation policies being rolled out, the most notable being the National Digital Health Mission (re-designed as the Aayushman Bharat Digital Mission) which empowered and saw the government use the vaccination process to generate Health IDs for citizens, in several reported cases without their knowledge or consent.15 The entire digitisation process has been undertaken in the absence of any legislative mandate or judicial oversight. It has primarily been undertaken through issuance of executive notifications and resulting in absent or inadequate grievance redressal mechanisms.

The rollout of the NDHM also saw health IDs being generated for citizens. In several reported cases across states, this rollout happened during the Covid-19 vaccination process— without the informed consent of the concerned person. All of these developments took place in the absence of a data protection law and a law regulating the digital health sphere, raising critical concerns around citizens’ privacy and the governance and oversight mechanisms for digital health initiatives.

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