Digital Health at the crossroads of human rights, AI governance, and e-trade (SouthCentre)

Arguments

India’s digitalization and public health have been driven by software volunteers followed by state policy

Supporting facts:

• The digital ID system and digital public health ID were first developed by software volunteers

• The state later took up these initiatives and created systems like the Unified Payments Interface system

Topics: digitalization, public health, India

---

Technological innovations have outpaced the capacity of the state to regulate their applications

Supporting facts:

• The emergence of new technologies in public health has created disjointed implementation

• Data ecosystems tend to develop faster than states can formulate policies or laws

Topics: technology regulation, state capacity

---

Digitalization has transformed the entire architecture of data governance in the health sector

Supporting facts:

• Datafication has led to centralization of what were traditionally decentralized structures within the federal system

• There’s unregulated data transfers, data sharing and third party use of data in the health sector

Topics: digitalization, data governance, health sector

---

There is a weak bargaining power of developing countries in the context of e-trade

Supporting facts:

• Developing countries are at risk of misuse of health data

• Bilateral trade agreements can facilitate MNCs’ access to sensitive public data

Topics: e-trade, developing countries, bargaining power

---

The handling of health data requires a balance of rights and understanding of the role of the state.

Supporting facts:

• The right to enjoy health and the right to freedom from harm must be balanced.

• Individual and collective rights need balance.

• The role of the state involves harm prevention, allocation, distribution, and redistribution.

• Preconception and Prenatal Diagnostic Techniques Act in India is an example of state collecting data for public interest.

Topics: health, data, state role

---

Report

In the discussion on India’s digitalisation and public health, several key points were raised. Firstly, it was highlighted that software volunteers played a significant role in the development of digital ID systems and digital public health IDs. These initiatives were later taken up by the state and implemented on a larger scale.

This showcases the collaborative efforts between citizens and the government in driving digitalisation and improving public health. On the other hand, the rapid emergence of new technologies in the public health sector has created challenges in terms of implementation and regulation.

It was argued that the state’s capacity to regulate the applications of these technologies lags behind their development. This disjointed implementation can potentially hinder the effective integration of technology into the healthcare system. Moreover, the digitisation of the health sector has brought about a fundamental transformation in data governance.

What was traditionally a decentralised structure within the federal system has now been centralised through datafication. This has raised concerns about unregulated data transfers, data sharing, and third-party usage in the health sector. It was emphasised that digitalisation has fundamentally reshaped the entire architecture of data governance, and there is a need for robust regulations to safeguard individual privacy and ensure ethical data usage.

Another important aspect discussed was the weak bargaining power of developing countries in the context of e-trade. It was highlighted that developing countries are at risk of the misuse of health data, particularly when bilateral trade agreements facilitate multinational corporations’ access to sensitive public data.

This power imbalance raises concerns about the protection of sensitive information and the potential exploitation of developing countries’ resources. Addressing these challenges, the need for a rights-based national policy was stressed. This policy would ensure the protection of the right to health throughout the data lifecycle.

It was argued that the current context of data ownership and usage lacks necessary guardrails against free-riding and thus, a rights-based approach would prioritise public health innovation over private data usage. Furthermore, the handling of health data was seen as requiring a delicate balance between individual and collective rights.

The role of the state in harm prevention, allocation, distribution, and redistribution was emphasised. An example cited was the Preconception and Prenatal Diagnostic Techniques Act in India, where the state collects data for public interest. It was concluded that a comprehensive understanding of the role of the state, along with a balanced approach to rights, is essential in the handling of health data.

In conclusion, the discussion shed light on the opportunities and challenges arising from India’s digitalisation and its impact on public health. While software volunteers have played a crucial role in driving digital initiatives, there is a need to bridge the gap between technological advancements and effective regulation.

Data governance in the health sector needs to be carefully addressed to protect individual privacy and ensure ethical data usage. Developing countries should also address the weak bargaining power in e-trade to prevent the misuse of health data. Ultimately, a rights-based national policy articulation is necessary to safeguard public health throughout the data lifecycle and strike a balance between individual and collective rights.

Arguments

The economic model of a sector greatly influences approach to data governance

Supporting facts:

• Rory McMillan’s work in drafting data governance legislations and his observation on how different countries approach the economic model of healthcare sector either by state role or private sector companies

Topics: data governance, economic models, public service, private sector

---

Pooling of data is essential to reap the public good and may overrule individual consent in some cases

Supporting facts:

• The viewpoint that the public need to analyze data is so strong that if health service is provided, it comes with the understanding that individual data will be used, but anonymised or de-identified

Topics: public good, data pooling, consent

---

Economic model impacts competition concerns

Supporting facts:

• Mentions of numerous competition concerns from different speakers in the discussion

• McMillan’s active work in the competition field and recognition of these issues

Topics: competition, economic models

---

There is a need for more comprehensive privacy protections, especially in the health sector

Supporting facts:

• There is currently no comprehensive privacy protection in the US

• Patients are often unaware of the extent of data they share when they sign ‘consign forms’

Topics: privacy protection, health data sharing, consent forms

---

Patients who share their data for drug development do not receive any benefits

Supporting facts:

• Data shared by patients contributes to the development of personalized medicines

• There is little discussion on this issue of access and benefit sharing

Topics: access and benefit sharing, price of medicines, drug development, personalized medicines

---

Concerns about data interoperability between the public and private sector

Supporting facts:

• The Audience, Theo Phil is a PhD candidate working on a similar project in West Africa

Topics: data management, public sector, private sector

---

Worry about the private sector’s willingness to share data due to fear of control by the public sector

Supporting facts:

• Theo read an article about a Western European country where the private sector was apprehensive about sharing data due to feelings of being controlled.

Topics: data sharing, public control

---

Report

The discussion centred on the impact of different economic models on data governance in the healthcare sector. The approach to data governance differs significantly between countries with state-controlled healthcare, such as Canada and the UK, and those with privately dominated healthcare, like Switzerland and the US.

This highlights the direct influence that the economic model of a sector has on its approach to managing data. The discussion emphasized the importance of data pooling for the greater public good. It was acknowledged that in some cases, the need to analyze data for the benefit of the public may outweigh individual consent.

The belief that when healthcare services are provided, it is understood that individual data will be used, although anonymised or de-identified, further supports the concept of pooling data for the common good. Management of data bureaucracy was found to differ between state-controlled sectors and privately dominated sectors.

It was noted that if the state controls the sector, issues of data ownership and the legitimacy of pooling data are resolved, as the state is seen as representing the public interest. In contrast, in privately dominated sectors, the regulation of companies becomes a crucial factor in managing data bureaucracy.

Competition concerns within the healthcare sector were also raised during the discussion. Several speakers expressed concerns about competition in the sector and called for better regulations to address these issues. The active work of Rory McMillan in the competition field was recognized, reinforcing the importance of this matter.

Privacy protection in the healthcare sector, particularly in the US, was found to be inadequate. Patients often remain unaware of the extent of data they share when signing consent forms. This observation highlights the need for more comprehensive privacy protections, especially in the health sector, to ensure that patients’ privacy rights are respected.

Another issue that received attention was the lack of benefits received by patients who share their data for drug development. It was recognized that data shared by patients contributes significantly to the development of personalized medicines, yet there is little discussion about access and benefit sharing.

This raises ethical concerns about patients not receiving any benefits from the use of their data for drug development. The discussion also emphasized the need for more in-depth deliberation on health data sharing and its implications. It was noted that pharmaceutical innovation increasingly relies on health data sharing, but many privacy and data protection issues remain unaddressed.

This underscores the importance of thoroughly examining the implications and issues related to health data sharing to ensure that proper safeguards are in place. Concerns about data interoperability between the public and private sectors were also raised during the discussion.

It was observed that data management between these two sectors is a concern, and there is a need to address issues related to data sharing and control. One noteworthy observation was the apprehension from the private sector about sharing data due to fears of control by the public sector.

This highlights the need to build trust and establish clear guidelines that allay concerns and encourage data sharing for the mutual benefit of all stakeholders. In conclusion, the discussion shed light on various aspects related to data governance in the healthcare sector.

The influence of different economic models, competition concerns, privacy protections, access and benefit sharing, and data interoperability between the public and private sectors were all identified as important areas of focus. The need for comprehensive and robust frameworks to address these challenges and ensure the proper handling and sharing of health data was emphasised throughout the discussion.

Arguments

Digital health technologies are public goods that must be used in the public interest.

Supporting facts:

• Brazilian general context includes data breaches, creation new government secretariat related to digital health, competition framework in health sector, impact of internet access on digital health, and the potential of AI in health sector.

• Digitalization of health in Brazil captured by private interests.

Topics: Digital Health, Public Interest, Health Data, Health Services

---

Guarantee basic rights such as information, transparency, and security.

Supporting facts:

• Individuals’ privacy and personal data protection are at risk with digital health services.

• Concerns related to how pharmaceuticals treat data and concerns in the health sector.

Topics: Digital Health, Data Privacy, Data Security

---

Need for global and local discussions on AI

Supporting facts:

• The discussion on AI should consider local context

• International discussions required for uniformity in protection and solutions

Topics: Artificial Intelligence, Data Governance, Fundamental Health Right

---

Emphasis on the centrality of people’s rights in data

Supporting facts:

• People should be in the center of data ownership

• Discussions on data governance should not forget the fundamental right to health

Topics: Data Governance, Fundamental Health Right, People’s Rights

---

Report

The analysis explores various perspectives on the use of digital health technologies in the public interest. The first speaker argues that digital health technologies should be considered public goods, benefiting society as a whole. They discuss the Brazilian context, including data breaches, the establishment of a new government secretariat for digital health, competition within the health sector, the impact of internet access on digital health, and the potential of artificial intelligence (AI) in the sector.

The speaker suggests that the digitalization of health in Brazil has been primarily driven by private interests. The second speaker presents a contrasting view, cautioning against the private sector’s exploitation of personal data in digital health. They describe a scenario where big tech companies increasingly operate in the health sector, citing the Google-Fitbit merger as an example and raising concerns about the sharing of health data with Google.

They also address issues of data sovereignty, particularly regarding health data stored in foreign clouds, as well as concerns related to discrimination, exclusion, and data protection in the pharmacy sector. The third speaker emphasizes the importance of guaranteeing basic rights such as information, transparency, and security in digital health services.

They highlight potential risks to individuals’ privacy and personal data with the increased use of such services. The speaker also raises concerns about how pharmaceutical companies handle data and broader issues within the health sector. The fourth and fifth speakers both highlight the need for global and local discussions on AI.

The fourth speaker argues that AI discussions must consider the local context, while the fifth speaker emphasizes the centrality of people’s rights in data governance and underscores the fundamental right to health. Both speakers stress the importance of international discussions to achieve consistency in protection and solutions related to AI.

The sixth speaker advocates for utilizing platforms like UNCTAD (United Nations Conference on Trade and Development) for international discussions on AI-related issues. They propose using UNCTAD to harmonize policies and promote effective international cooperation in addressing AI challenges. Overall, the analysis presents diverse perspectives on the use of digital health technologies in the public interest.

It underscores the complexities, challenges, and opportunities associated with these technologies, and emphasizes the role of various stakeholders, privacy, data protection, and the importance of global collaboration in addressing the issues at hand.

Arguments

Issues with consent and data protection in the pharmaceutical sector

Supporting facts:

• Use of personal data for algorithmic pricing and personalised advertisements, especially with the aid of third-party loyalty programs in the pharmaceutical sector

• Customers usually are not informed of what is being done with their data

• The legal basis of processing is often consent, which is problematic due to the imbalance of power and information, and the manipulation of such consent

Topics: Artificial Intelligence, Data Protection, Healthcare, Pharmaceutical Sector

---

Public and private sectors must work together for innovation

Supporting facts:

• The state has innovated along with Tesla, the aerospace industry, and health industry

• The state fulfills its goals by encompassing private actors

Topics: Public sector, Private sector, Innovation, Partnerships

---

Report

During the discussion, various important topics related to data protection in the pharmaceutical sector were explored. One significant issue that was raised is the use of personal data for algorithmic pricing and personalized advertisements. This practice is particularly prevalent in the pharmaceutical sector, often facilitated by third-party loyalty programs.

It was highlighted that customers are generally not informed about how their personal data is used in these processes, which raises concerns about transparency and consent. The legal basis for processing personal data in the pharmaceutical sector was also identified as problematic.

Consent is often relied upon as the legal basis for processing, but the imbalance of power and information between consumers and pharmaceutical companies makes obtaining truly informed and voluntary consent challenging. Furthermore, there are concerns about the manipulation of consent, where individuals may unknowingly agree to the use of their personal data without fully understanding the implications.

The need for the enforcement of fair and transparent data practices in the pharmaceutical sector was emphasized. As an example of such enforcement, Brazil’s Data Protection Authority initiated an investigation in 2021 to examine the practices in this sector. It was highlighted that there is a lack of transparency and maturity in data protection compliance within pharmacies and the pharmaceutical industry as a whole.

This underscores the importance of implementing robust mechanisms to ensure that personal data is handled in a manner that respects individual privacy rights and is in compliance with data protection regulations. Apart from data protection, the speakers also emphasized the significance of collaboration between the public and private sectors for innovation.

It was noted that the state has successfully engaged with private actors in industries such as Tesla, aerospace, and healthcare to drive innovation. This highlights the value of partnerships between different sectors, leveraging the strengths and expertise of each party for mutual benefit and technological progress.

Furthermore, the speakers stressed the importance of respecting fundamental rights during the pursuit of medical advancement. Historical examples were given to illustrate the necessity of ethical standards in medical procedures. Instances of unethical practices, such as injecting patients with diseases without their knowledge, were highlighted as breaches of fundamental rights.

It was argued that respecting these rights is crucial in ensuring the safety and protection of individuals during medical advancements, acting as guardrails to prevent unethical behavior. In conclusion, the discussion revolved around the importance of data protection in the pharmaceutical sector and the need for fair and transparent data practices.

Concerns were raised regarding issues with consent and the use of personal data for algorithmic pricing and personalized advertisements. Furthermore, the significance of public and private sector collaboration for innovation was emphasized, along with the need to respect fundamental rights during the pursuit of medical advancement.

The insights gained from this analysis shed light on the challenges and opportunities in these areas and the importance of addressing them to ensure a responsible and ethical approach towards data and medical advancements.

Arguments

Technological innovation is leading to a transformation in health systems, specifically through the ability to scale up data collection, the creation of large health data platforms, and the use of this data for AI innovation.

Supporting facts:

• Examples of countries creating large health data platforms include Brazil (RDS), Cuba (Infomed), the UK (contract with Palantir), Canada (Health InfoA) and the European Union (Health Data Spaces).

• AI can enhance diagnosis, optimize resource and time allocation, and predict and promote health.

Topics: Technological Innovation, Data Collection, Health Systems, AI Innovation

---

There are significant human rights concerns associated with AI and digital health, such as personal data protection and privacy, algorithm bias against vulnerable people, and contextual bias of AI algorithms trained in high resource settings.

Supporting facts:

• Current legal frameworks for issues such as medical mistakes and personal data protection may not be adequate for addressing concerns arising from AI use in health systems.

• AI can reproduce societal biases present in health data sets, leading to possibly biased health care decisions.

Topics: AI in Health, Human Rights, Privacy, Algorithm Bias

---

Current legal frameworks need to be transformed and adapted to address governance issues related to AI in health.

Supporting facts:

• Legal frameworks addressing safety, efficacy, and quality of AI in clinical settings need to adapt to the continuous learning and changing nature of AI.

• Some countries are discussing creating public bodies to control data bias.

Topics: AI Governance, Legal Frameworks, AI in Health

---

Economic fairness concerns should be considered, including data ownership, impacts on the workforce, and market monopolies due to data concentration.

Supporting facts:

• Health data being used to train algorithms can lead to ownership and geopolitical debates.

• Concentration of health data can lead to concentration of economic power, potentially exacerbating market inequalities.

Topics: Economic Fairness, Data Ownership, Workforce Impacts

---

No clear economic model for data innovation in healthcare

Supporting facts:

• The economic dimension of data relates to innovation in sectors like the pharmaceutical sector.

• Regulatory capacities to monitor data usage after innovation are necessary, especially in the global south.

Topics: Data Innovation, Healthcare, Economics

---

Importance of looking beyond personal data protection

Supporting facts:

• Data protection needs to include monitoring and regulation of how data is used for innovation.

• Emphasizes the role of states in regulation and in building public infrastructure for data handling.

• The World Health Organization highlights the need for developing regulatory capacities.

Topics: Data Protection, Regulation, Innovation

---

Advocates for a collective approach to health data

Supporting facts:

• Uses the example of Brazil’s data processing center, CIDACS, which has strict guidelines for use of data for innovation.

• Discusses the need for ensuring that innovations with health data benefit the users and the public system.

Topics: Health Data, Collective Approach, Public System

---

Report

Technological innovation has led to a significant transformation in health systems, particularly through advancements in data collection and the creation of large health data platforms. These innovations have enabled the scaling up of data collection efforts, allowing the healthcare industry to gather comprehensive and diverse datasets.

Artificial intelligence (AI) has emerged as a powerful tool in healthcare, enhancing diagnosis, optimizing resource allocation, and predicting health outcomes. These advancements hold promise for improving healthcare delivery and patient outcomes. However, the use of AI in health systems raises significant human rights concerns, including personal data protection, privacy, algorithm bias, and contextual bias.

Current legal frameworks may not be equipped to address these challenges. Transforming and adapting legal frameworks to address governance issues related to AI in health is crucial, including safety, efficacy, and quality of AI in clinical settings. Some countries are exploring the creation of public bodies to oversee data bias.

Economic fairness concerns, such as data ownership, workforce impacts, and concentration of economic power resulting from data concentration, need to be considered. Regulatory capacities to monitor data usage after innovation, especially in the global south, are necessary. Beyond personal data protection, the broader implications of data usage in healthcare innovation should be considered.

The role of states in regulation, building public infrastructure, and developing regulatory capacities is emphasized. Collective approaches to health data are advocated to ensure innovation benefits both users and the public system. It is essential to address human rights, governance, and economic fairness concerns to harness the full potential of technological innovation in improving health outcomes.

Collaboration between states and the private sector is key to creating a market framework that promotes innovation while protecting societal interests.

Arguments

Digital health technology is applicable to all contexts and has potential to improve efficacy of health systems globally

Topics: Digital Health, Health Systems, Technology

---

There is a large population in the world that do not have access to the internet or high-speed broadband

Supporting facts:

• 2.7 billion people in the world do not have access to the internet

• 53% of this population don’t have access to high-speed broadband

Topics: Digital Disparity, Internet Accessibility

---

Considerations for adoption of digital health technology include supporting equitable access, enhancing efficacy of health systems, respecting privacy and security

Topics: Digital Health Adoption, Equitable Access, Health System Efficacy, Privacy, Security

---

Report

Digital health technology has the potential to significantly improve the efficiency and effectiveness of health systems worldwide. This technology can be applied in various contexts and has the ability to enhance different aspects of healthcare delivery. However, it is important to address the issue of digital disparity, as a substantial portion of the global population lacks access to the internet or high-speed broadband.

Statistics indicate that approximately 2.7 billion people worldwide do not have internet access, and 53% of this population lack high-speed broadband. This creates a significant barrier to accessing digital health services and exacerbates existing inequalities in healthcare. Without adequate access to digital technologies, individuals are unable to fully benefit from the advancements in digital health.

The adoption of digital health technology should consider the principle of equitable access. This means ensuring that all individuals, regardless of their geographical location or socioeconomic status, have equal opportunities to access and benefit from digital health services. By prioritising equitable access, we can work towards reducing inequalities in healthcare and improving health outcomes for all.

Moreover, adopting digital health technology can enhance the efficacy of health systems. Digital technologies enable faster and more accurate data collection and analysis, facilitating improved clinical decision-making and treatment delivery. Additionally, digital health solutions can streamline administrative processes and reduce paperwork, enabling healthcare providers to allocate more time and resources to direct patient care.

However, while reaping the benefits of digital health technology, it is crucial to address privacy and security concerns. As more patient data is collected and transmitted through digital platforms, measures must be in place to safeguard this sensitive information. Strict privacy and security protocols should be implemented to protect patient confidentiality and prevent unauthorized access to personal health information.

In conclusion, digital health technology holds immense potential for improving health systems globally. However, it is essential to address the issue of digital disparity to ensure equitable access for all. Additionally, considerations for adoption should include enhancing the efficacy of health systems and addressing privacy and security concerns.

To maximize the effectiveness of digital health technology in improving healthcare outcomes, it is necessary to adopt it while considering the unique context and situations of different countries.