Centre for Internet and Society

UN Questionnaire on Digital Innovation, Technologies and Right to Health

Pahlavi and Shweta Mohandas — 2022-11-21T16:10:06Z

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.

Questionnaire

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.

Valdez, R. S., Rogers, C. C., Claypool, H., Trieshmann, L., Frye, O., Wellbeloved-Stone, C., & Kushalnagar, P. (2021). Ensuring full participation of people with disabilities in an era of telehealth. Journal of the American Medical Informatics Association, 28(2), 389-392.
Paul, Hickok, Sinha, & Tiwari. (2018). Artificial Intelligence in the Healthcare Industry in India. Centre for Internet and Society India. Retrieved November 15, 2022, from https://cis-india.org/internet-governance/ai-and-healthcare-report/view
Dayalani, V., K., H., S., G., R., T., & M., L. (2021, February 15). 1mg Rises In Indian Telemedicine Space As Sector Set To Touch $5.4 Bn Market Size by 2025. Inc42 Media. Retrieved November 15, 2022, from https://inc42.com/datalab/telemedicine-a-post-covid-reality-in-india/
Government of Telangana adopts Microsoft Cloud and becomes the first state to use Artificial Intelligence for eye care screening for children - Microsoft Stories India. (2017, August 3). Microsoft Stories India. Retrieved November 15, 2022, from https://news.microsoft.com/en-in/governmenttelangana-adopts-microsoft-cloud-becomes-first-state-use-articial-intelligence-eye-care-screeningchildren/
D’Monte, L. (2017, February 15). How Philips is using AI to transform healthcare. Mint. Retrieved November 15, 2022, from https://www.livemint.com/Science/yxgekz1jJJ3smvvRLwmaAL/How-Philips-is-using-AI-to-transformhealthcare.html
PTI. (2022, November 11). Microsoft supports IWill with “AI for Accessibility” grant to develop AI CBT mental health program for 615 million Hindi users. Microsoft Supports IWill With “AI for Accessibility”Grant to Develop AI CBT Mental Health Program for 615 Million Hindi Users. Retrieved November 15,2022, from https://www.ptinews.com/pti/Microsoft-supports-IWill-with--AI-for-Accessibility--grant-todevelop-AI-CBT-mental-health-program-for-615-million-Hindi-users/58238.html
Nath. (2020, May 2). Coronavirus | Mandatory Aarogya Setu app not accessible to persons with disabilities.Coronavirus | Mandatory Aarogya Setu App Not Accessible to Persons With Disabilities - the Hindu. Retrieved November 15, 2022, from https://www.thehindu.com/news/national/coronavirus-mandatory-aarogya-setu-app-notaccessible-to-persons-with-disabilities/article31489933.ece
Sharma, N. C. (2018, July 16). Adoption of e-medical records facing infra hurdles: Report. Mint. Retrieved November 15, 2022, from https://www.livemint.com/Politics/CucBmKaoWLZuSf1Y9VaafM/Adoption-of-emedical-recordsfacing-infra-hurdles-Report.html
https://www.livemint.com/news/world/ai-algorithms-far-from-neutral-in-india-11613617957200.html
Vipra. (n.d.). The Use of Facial Recognition Technology for Policing in Delhi. Vidhi Centre for Legal Policy. Retrieved November 15, 2022, from https://vidhilegalpolicy.in/research/the-use-of-facial-recognition-technology-for-policingin-delhi/
Kalra, A., & Ghoshal, D. (2021, April 21). Twitter becomes a platform of hope amid the despair of India’s COVID crisis. Reuters. Retrieved November 15, 2022, from https://www.reuters.com/world/india/twitterbecomes- platform-hope-amid-despair-indias-covid-crisis-2021-04-21/
Times of India . (2020, April 29). WhatsApp message on Homeopathy and coronavirus treatment is fake- Times of India. The Times of India. Retrieved November 15, 2022, from https://timesondia.indiatimes.com/gadgets-news/whatsapp-message-on-homeopathy-and-coronavirustreatment-is-fake/articleshow/75425274.cms
Amber Sinha, Pallavi Bedi and Amber Sinha, “Techno-Solutinist Responses to Covid 19”, EPW, Vol LVI, No. 29, July 17, 2021 Retrieved from: https://www.epw.in/journal/2021/29/commentary/technosolutionist-responses-covid-19.html
Rana, C. (2021, October 1). COVID-19 vaccine beneficiaries were assigned unique health IDs without their consent.The Caravan. Retrieved November 15, 2022, from https://caravanmagazine.in/health/covid-19-vaccinebeneficiaries-were-assigned-unique-health-ids-without-their-consent

For more details visit https://cis-india.org/internet-governance/un-questionnaire-digital-innovation-technologies-right-to-health

Techno-solutionist Responses to COVID-19

Amber Sinha, Pallavi Bedi and Aman Nair — 2021-08-10T15:34:06Z

The Indian state has increasingly adopted a digital approach to service delivery over the past decade, with vaccination being the latest area to be subsumed by this strategy. In the context of the need for universal vaccination, the limitations of the government’s vaccination platform Co-WIN need to be analysed.

The article by Amber Sinha, Pallavi Bedi, and Aman Nair was published in the Economic & Political Weekly, Vol. 56, Issue No. 29, 17 Jul, 2021.

Over the last two decades, slowly but steadily, the governance agenda of the Indian state has moved to the digital realm. 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. The first set of NeGP projects focused on digitalising governance schemes that dealt with taxation, regulation of corporate entities, issuance of passports, and pensions. Over a period of time, they have come to include most interactions between the state and citizens from healthcare to education, transportation to employment, and policing to housing. Upon the launch of the Digital India Mission by the union government, the NeGP was subsumed under the e-Gov and e-Kranti components of the project. The original press release by the central government reporting the approval by the cabinet of ministers of the Digital India programme speaks of “cradle to grave” digital identity as one of its vision areas. This identity was always intended to be “unique, lifelong, online and authenticable.”

Since the inception of the Digital India campaign by the current government, there have been various concerns raised about the privacy issues posed by this project. The initiative includes over 50 “mission mode projects” in various stages of implementation. All of these projects entail collection of vast quantities of personally identifiable information of the citizens. However, most of these initiatives do not have clearly laid down privacy policies. There is also a lack of properly articulated access control mechanism and doubts exist over important issues such as data ownership owing to most projects involving public–private partnership which involves a private organisation collecting, processing and retaining large amounts of data. Most importantly, they have continued to exist and prosper in a state of regulatory vacuum with no data protection legislation to govern them. Further, the state of digital divide and digital literacy in India should automatically underscore the need to not rely solely on digital solutions.

Click to read the full article here

For more details visit https://cis-india.org/internet-governance/blog/economic-and-political-weekly-july-17-2021-amber-sinha-pallavi-bedi-aman-nair-techno-solutionist-responses-to-covid-19

NIPFP Seminar on Exploring Policy Issues in the Digital Technology Arena

Admin — 2019-10-20T07:40:16Z

Anubha Sinha participated in this seminar as a discussant on the "Regulating emerging technologies" panel. The event was held at Indian Institute of Advanced Study, Shimla on October 10 - 11, 2019.

Click to view the agenda here. The session briefs can be seen here.

For more details visit https://cis-india.org/internet-governance/news/nipfp-seminar-on-exploring-policy-issues-in-the-digital-technology-arena

Digital Delivery and Data System for Farmer Income Support

sameet — 2023-10-18T23:40:25Z

This report, jointly published by the Centre for Internet & Society and Privacy International, highlights the digital systems deployed by the government to augment farmer income. It analyses the PM-Kisan and Kalia schemes in Odisha and Andhra Pradesh.

Executive Summary

This study provides an in-depth analysis of two direct cash transfer schemes in India – Krushak Assistance for Livelihood and Income Augmentation (KALIA) and Pradhan Mantri Kisan Samman Nidhi (PM-KISAN) – which aim to provide income support to farmers. The paper examines the role of data systems in the delivery and transfer of funds to the beneficiaries of these schemes, and analyses their technological framework and processes.

We find that the use of digital technologies, such as direct benefit transfer (DBT) systems, can improve the efficiency and ensure timely transfer of funds. However, we observe that the technology-only system is not designed with the last beneficiaries in mind; these people not only have no or minimal digital literacy but are also faced with a lack of technological infrastructure, including internet connectivity and access to the system that is largely digital.

Necessary processes need to be implemented and personnel on the ground enhanced in the existing system, to promptly address the grievances of farmers and other challenges.

This study critically analyses the direct cash transfer scheme and its impact on the beneficiaries. We find that despite the benefits of direct benefit transfer (DBT) systems, there have been many instances of failures, such as the exclusion of several eligible households from the database.

The study also looks at gender as one of the components shaping the impact of digitisation on beneficiaries. We also identify infrastructural and policy constraints, in sync with the technological framework adopted and implemented, that impact the implementation of digital systems for the delivery of welfare. These include a lack of reliable internet connectivity in rural areas and low digital literacy among farmers. We analyse policy frameworks at the central and state levels and find discrepancies between the discourse of these schemes and their implementation on the ground.

We conclude the study by discussing the implications of datafication, which is the process of collecting, analysing, and managing data through the lens of data justice. Datafication can play a crucial role in improving the efficiency and transparency of income support schemes for farmers. However, it is important to ensure that the interests of primary beneficiaries are considered – the system should work as an enabling, not a disabling, factor. This appears to be the case in many instances since the current system does not give primacy to the interests of farmers. We offer recommendations for policymakers and other stakeholders to strengthen these schemes and improve the welfare of farmers and end users.

Click to download the full report

For more details visit https://cis-india.org/internet-governance/blog/cis-privacy-international-digital-delivery-and-data-system-for-farmer-income-support

Deployment of Digital Health Policies and Technologies: During Covid-19

pallavi — 2022-07-21T14:49:56Z

In the last twenty years or so, the Indian government has adopted several digital mechanisms to deliver services to its citizens.

Digitisation of public services in India began with taxation, land record keeping, and passport details recording, but it was soon extended to cover most governmental services - with the latest being public health. The digitisation of healthcare system in India had begun prior to the pandemic. However, given the push digital health has received in recent years especially with an increase in the intensity of activity during the pandemic, we thought it is important to undertake a comprehensive study of India's digital health policies and implementation. The project report comprises a desk-based research review of the existing literature on digital health technologies in India and interviews with on-field healthcare professionals who are responsible for implementing technologies on the ground.

The report by Privacy International and the Centre for Internet & Society can be accessed here.

For more details visit https://cis-india.org/internet-governance/blog/deployment-of-digital-health-policies-and-technologies-during-covid-19

Comments to the Draft Digital Competition Bill, 2024

Abhineet Nayyar, Isha Suri, and Pallavi Bedi (in alphabetical order) — 2024-06-11T10:13:22Z

This submission is a response by researchers at the Centre for Internet and Society India (CIS) to the draft Digital Competition Bill, 2024, published by the Committee on Digital Competition Law (CDCL), Ministry of Corporate Affairs (MCA), (hereafter “draft DCB” or “draft Bill”).

We would like to thank the Ministry of Corporate Affairs for soliciting public comments on this important legislation and are grateful for this opportunity.

At the outset, CIS affirms the Committee’s approach to transition from a predominantly ex-post to an ex-ante approach for regulating competition in digital markets. The Committee’s assessment of the ex-post regime being too time-consuming for the digital domain has been substantiated by frequent and expensive delays in antitrust disputes, a fact that has also recently drawn the attention of the Ministry of Corporate Affairs. And not just in India, the ex-post regime has been found to be too time-consuming in other jurisdictions as well, as a consequence of which many other countries are also moving towards an ex-post regime for digital markets. This also allows India to be in harmony with both developing and developed countries, which makes regulating global competition more consistent and efficient. In fact, “international cooperation between competition authorities” and “greater coherence between regulatory frameworks” are key in facilitating global investigations and lowering the cost of doing business.

Moreover, by adopting a principles-based approach to designing the law’s obligations, the draft Bill also addresses the concern that ex-ante regulations, due to their prescriptive nature, tend to be sector-agnostic. The fact that these principles are based on the findings of the Parliamentary Standing Committee’s (PSC) Report on ‘Anti-Competitive Practices by Big Tech Companies’ only lends them more evidence. The draft DCB empowers the Commission to clarify the Obligations for different services, and also provides CCI with the flexibility to undertake independent consultations to accommodate varying contexts and the needs of different core digital services. We do, however, have specific comments regarding implementing some of these provisions, which are elaborated in the accompanying document.

We would also like to emphasise that adequate enforcement of an ex-ante approach requires bolstering and strengthening regulatory capacity. Therefore, to minimise risks relating to underenforcement as well as overenforcement, CCI, its Digital Markets and Data Unit (DMDU), and the Director General’s (DG) office will have to substantially increase their technical capacity. A comparison of CCI’s current strength with its global counterparts that have adopted or are in the process of adopting an ex-ante approach to competition regulation reveals a stark picture. For example, the European Union (EU) had over 870 people in its DG COMP unit in 2022, and its DG CONNECT unit is expected to hire another 100 people in 2024 alone. Similarly, the United Kingdom’s Competition and Markets Authority (CMA) has a permanent staff of 800+, the Japan Fair Trade Commission (JTFC) has about 400 officials just for regulating anti-competitive conduct, and South Korea’s KFTC has about 600 employees. In contrast, CCI and DG, combined, have a sanctioned strength of only 195 posts, out of which 71 remain vacant. Bridging this capacity gap through frequent and high-quality recruitment is, therefore, the need of the hour. Most importantly, there is a need to create a culture of interdisciplinary coordination among legal, technical, and economic domains.

Moreover, as we come to rely on an increasingly digitised economy, most technology companies will work with critical technology components such as key infrastructure, algorithms, and Artificial Intelligence to business models that are based on data collection and processing practices. Consequently, there will be a need to bolster CCI’s capacity in the technical domain by hiring and integrating new roles including technologists, software and hardware engineers, product managers, UX designers, data scientists, investigative researchers, and subject matter experts dealing with new and emerging areas of technology.21 Therefore, we recommend CCI to ensure that the proposed DMDU has the requisite diversity of skills to effectively use existing tools for enforcement and is also able to keep pace with new and emerging technological developments.

Along with this overall observation of CCI's capacity, we have also submitted detailed comments on specific clauses of the draft DCB. These submissions are structured across the following six categories: i) Classification of Core Digital Services; ii) Designation of a Systemically Significant Digital Enterprise (SSDE) and Associate Digital Enterprise (ADE); iii) Obligations on SSDEs and ADEs; iv) Powers of the Commission to Conduct an Inquiry; v) Penalties and Appeals; and vi) Powers of the Central Government. In addition to these suggestions, the detailed comments and their summarised version focus on three important gaps in the draft DCB – limited representation from workers’ groups and MSMEs, exclusion of merger and acquisition (M&A) from the discussions, and lack of a formalised framework for interregulatory coordination.

For our full comments, click here

For a detailed summary of our comments, click here

For more details visit https://cis-india.org/internet-governance/blog/comments-to-the-draft-digital-competition-bill