Sovereign Health Systems and the Collective Privacy Gap: What the World's First Indigenous-Sovereign AI Health Initiative Reveals About the Limits of Current Governance

May Siksik highlights that approximately 4.6 billion people globally lack access to basic healthcare. She further points out that 86% of healthcare intelligence data comes from European populations, who represent only 16% of humanity, while communities bearing the greatest disease burden remain severely underrepresented.

May Siksik stated that about 4.6 billion people, more than half the planet's population, do not have access to basic healthcare . She noted that 86% of healthcare algorithm data comes from European populations, who represent only 16% of humanity, with genomic data from underrepresented communities at only 2% .

May Siksik uses the example of indigenous peoples in Canada to illustrate the concrete human cost of healthcare inequity. She notes that in some countries, life expectancy can be as much as 20 years lower, and specifically in Canada, indigenous people live 15 years less than the rest of the population.

May Siksik cited that in some countries life expectancy is about 20 years less than others, and specifically that in Canada, indigenous people live 15 years less than everybody else .

May Siksik describes the Healthcare Without Borders initiative as a response to the recognised global healthcare challenge. The initiative focuses on building AI-based infrastructure that is equitable, accessible, and sovereign, and is co-designed with the communities it is intended to serve.

May Siksik explained that Innovation Network established Healthcare Without Borders as a global collaborative initiative focused on building AI-based infrastructure to address healthcare inequity . She emphasised that the initiative would not be effective without co-designing it with the communities it serves, and highlighted the Tsleil-Waututh Nation as the founding implementation partner for the first reference model .

May Siksik highlights that the initiative has developed AI for clinical intelligence that is compact enough to run on a phone, requiring low power and minimal storage without needing internet connectivity. This ensures that communities can access clinical intelligence even in remote areas, while federated learning addresses sovereignty when connecting to the cloud.

May Siksik described that the initiative developed AI for clinical intelligence that fits on a phone, is low power, takes very little space, and does not require connectivity . She noted that when communities do want to connect to the cloud, federated learning is used to achieve full sovereignty .

May Siksik argues that the most important action for the upcoming Commonwealth heads of government meeting would be to form a dedicated committee to work on designing and deploying the healthcare model across different contexts. She emphasises that the Commonwealth is well positioned for this due to its many member countries, many of which struggle with rural medicine.

May Siksik stated that her top priority would be to assemble a committee that would work with the initiative to create a scalable model that takes context into account, noting that the Commonwealth is well positioned as a partner given its many member countries and shared challenges around rural medicine . She also referenced her previous advocacy at the Commonwealth trade ministers meeting in Namibia .

May Siksik argues that data has become an extremely valuable resource, yet many communities, particularly indigenous ones, have been denied access to their own data. She stresses that sovereignty is essential to give communities control over their data and the ability to collaborate and share intelligence globally.

May Siksik noted that data is now a new gold and that indigenous communities in Canada, for example, have not had access to their own data to learn from it and act on it . She emphasised that sovereignty is critical to give communities access to their data, power over what they do with that knowledge, and the ability to collaborate and share intelligence globally .

Nicholas Kofi explains that for the Tsleil-Waututh Nation and Coast Salish people, governance is fundamentally about being the voice for the community. Every decision and action taken by the council is oriented towards the betterment of community members.

Nicholas Kofi stated that for Coast Salish people, governance means being the voice for the community, and that every decision and thought is for the betterment of the community .

Nicholas Kofi describes how healthcare has historically been a site of trauma for his people, including testing and what he describes as torture through the residential school system. This historical trauma is a primary reason why many indigenous people are reluctant to engage with Western medicine.

Nicholas Kofi explained that healthcare had serious repercussions for his people and was the site of testing and torture, particularly through the residential school system . He noted that undoing this trauma is one of the first steps the nation's government must take, and that many of his people do not want to return to Western medicine because they have been treated as a project .

Nicholas Kofi emphasises that the opportunity to be involved from the very beginning of the initiative, with tools in hand and surrounded by people with genuine interest in the community's wellbeing, is unprecedented. He stresses the importance of approaching this as educated partners rather than as test subjects.

Nicholas Kofi described the initiative as an opportunity for the nation to be at the main table with tools in hand, surrounded by people who genuinely have their best interests at heart, which is something his people have not previously had . He stated that the nation wants to come at this from an educated way, learning and adapting for their people not as test subjects but on the same level .

Robert Bartlett describes the historical pattern where indigenous nations have ended up selling or losing their data, only to then have to beg for that information to be used for their own benefit. He argues that the Healthcare Without Borders initiative changes this dynamic by placing the nation at the forefront of their own healthcare.

Robert Bartlett noted that the challenge has always been that the nation seems to end up selling their data and then people use that data, leaving the nation begging for the information to be used for their own benefit . He stated that this initiative changes the whole perspective by putting the nation at the front of making healthcare for themselves .

Robert Bartlett expresses the Tsleil-Waututh Nation's commitment to sharing what they learn from this initiative with other nations, so that others do not have to go through the same difficulties. He links this knowledge-sharing goal to the importance of maintaining tight control over their own data and information.

Robert Bartlett stated that as the nation builds this system, they want to give what they learn to other nations because they do not want others to go through the same challenges . He emphasised that to do this effectively, they need the comfort and capability to keep their information secure .

Pam Dixon explains that virtually all global privacy law, including human rights frameworks, is based on individual rights rather than collective ones. This creates a significant governance gap because communities cannot effectively assert their collective rights under existing legal frameworks.

Pam Dixon noted that all human rights frameworks, including the European Charter of Human Rights and UN Human Rights, are individually based, and that all privacy law is individually based with almost no exception . She illustrated this gap with a technical slide showing the difference between individual-level measurement and collective system-level behaviour .

Pam Dixon describes her discovery of the Māori conception of privacy through her work with the New Zealand government on the Aotearoa Algorithmic Charter. Unlike Western privacy frameworks, the Māori model is entirely collective, with no concept of individual privacy, which she found profoundly challenging to understand from a Western perspective.

Pam Dixon recounted her work with the New Zealand government around 2020-2021 on the Aotearoa Algorithmic Charter, a formal treaty with the Māori tribe . She described how the Māori conception of privacy is entirely collective with no individual privacy, which she found mind-bending and took her several years to begin to understand .

Pam Dixon argues that AI and machine learning systems do not operate on an individual basis but rather on a collective basis, exhibiting system-level behaviour. This technical reality happens to align with the indigenous collective model of privacy and governance, suggesting a natural compatibility between the two.

Pam Dixon stated that artificial intelligence and machine learning work on a collective basis in the technical realm, and that AI systems exhibit collective system-level behaviour . She noted that this happens to match the indigenous model, and that current work involves figuring out how to transcribe collective governance into technology .

Pam Dixon highlights that approximately 40 small island developing states have no data protection governance on the books, largely because GDPR is too burdensome to implement. She recommends the Council of Europe Framework 108 Plus as an accessible alternative open to all countries that would provide enforceable data management rules.

Pam Dixon noted that approximately 40 small island developing states lack any form of data protection governance, and that GDPR is far too heavy a lift for them . She recommended the Council of Europe Framework 108 Plus as an instrument open to all countries in the world that would allow jurisdictions to put in place enforceable data management rules .

Pam Dixon identifies data extractivism as a serious and troubling problem across Commonwealth jurisdictions, where external bodies extract data from communities without adequate governance or enforcement mechanisms. She argues that enforceable frameworks are needed to stop this practice and give communities genuine control over their data.

Pam Dixon described data extractivism happening across Commonwealth jurisdictions as very troubling, and stated that stopping it would be a top goal . She linked this to the need for the Council of Europe Framework 108 Plus to provide enforcement teeth against external bodies extracting data from these areas .

Luigi Serio explains the core principle of federated learning as bringing the algorithm to where the data is generated, rather than sending data to a central server. This approach makes data management more efficient and preserves privacy and confidentiality by keeping data local.

Luigi Serio described federated learning as a process where instead of sending data to a central server, the machine learning algorithm is brought to where the data is generated . He explained that in the healthcare context, algorithm models are sent to different nodes such as hospitals or nations, trained locally, and only the parameters of the model are transferred, meaning no data is shared .

Luigi Serio argues that federated learning enables communities to benefit from collective AI intelligence without having to share their raw data. This means communities can contribute to and benefit from powerful diagnostic and predictive models while all data remains privately and safely within their own systems.

Luigi Serio stated that federated learning allows communities to collectively contribute to a general model without sharing their data and to benefit from all this collective intelligence . He noted that this has been demonstrated to achieve very high performance models for prediction, diagnosis, and preventive medicine while keeping all data locally .

Luigi Serio provides concrete evidence of federated learning's viability by pointing to its operational use at CERN for physics research and its implementation in three major European healthcare projects. This demonstrates that the technology is not merely theoretical but has been proven to work in real-world settings.

Luigi Serio confirmed that federated learning is operational and working at CERN for research purposes, particularly in physics . He also stated that it has already been implemented in three major European healthcare projects and demonstrated to achieve very high performance algorithms for prediction, diagnosis, and preventive medicine while keeping all data locally .

Dino Dell'Accio describes the digital identity system developed at the United Nations, which enables 80,000 retirees residing in 192 countries to confirm that they are still alive. He frames this as one of the most important uses of emerging technology in enabling individuals to express and hold their human rights.

Dino Dell'Accio explained that the UN created a digital identity system to enable 80,000 retirees residing in 192 countries to confirm proof of life or proof of existence . He described this as probably one of the most important representations of the use of emerging technology in enabling individuals to express and hold their human rights .

Dino Dell'Accio explains the technical architecture of the UN's digital identity system, which combines three technologies: biometrics and facial recognition for authentication, blockchain for creating an immutable record, and AI for individual recognition and deepfake detection.

Dino Dell'Accio described using three technologies: biometrics and facial recognition to support authentication and proof of life, blockchain to create an immutable record of the transaction, and AI to help in the recognition of the individual and to fight AI with AI in terms of detecting and preventing potential deepfakes .

Dino Dell'Accio proposes renaming digital identity to digital dignity, arguing that the ability to use technology to confirm one's existence is a fundamental enabler of participation in the digital world. He frames this as the first step in enabling individuals to participate in the digital world in a direct manner.

Dino Dell'Accio stated that he renamed digital identity to digital dignity, emphasising that enabling each person to use technology to state, confirm, and demonstrate that they are alive is the first step in enabling beneficiaries to participate in the digital world .

Dino Dell'Accio responds to the tension between collective and individual privacy by arguing that blockchain technology can bridge both approaches. Its decentralised, distributed, and consensus-based nature supports collective governance, while zero-knowledge proof and privacy by design preserve individual privacy.

Dino Dell'Accio noted that blockchain is by its very nature decentralised, distributed, and based on a consensus mechanism, which supports collective approaches . He added that the use of zero-knowledge proof and privacy by design within blockchain allows for the maintenance of individual privacy simultaneously .

Raghwa Gopal argues that for healthcare leaders to adopt the model more broadly, success must be demonstrated across five specific dimensions. These are: improved health outcomes, community trust in data governance, operational performance for clinicians, economic sustainability, and scalability across different communities and jurisdictions.

Raghwa Gopal outlined five measures of success: better health outcomes including improved access and reduced inequities ; trust in data governance and privacy protection ; operational performance including reduced administrative burden and better clinical decision-making ; economic sustainability delivering better outcomes with scarce resources ; and scalability across different communities and jurisdictions while respecting local governance .

Raghwa Gopal argues that evidence alone is insufficient to transform healthcare systems. True transformation requires a combination of common standards, trusted governance frameworks, interoperable technologies, supportive public policy, committed leadership, and genuine partnership with communities.

Raghwa Gopal stated that transformation happens when successful innovation becomes repeatable innovation, and that this requires common standards, trusted governance, interoperable technologies, supportive public policy, committed leadership, and genuine partnership with communities .

Raghwa Gopal envisions a model where each implementation of the healthcare system builds upon and strengthens the next, creating a growing body of collective knowledge. Crucially, this should happen while each community maintains full sovereignty over its own data and decisions.

Raghwa Gopal stated that every implementation should strengthen the next one, and that each community should contribute to a growing body of knowledge while maintaining sovereignty over its own data and decisions .

Raghwa Gopal argues that health transformation is not fundamentally about deploying new technology, but about creating an ecosystem where multiple values reinforce each other. Trust, sovereignty, integrity, collaboration, and innovation must all work together to allow every community to benefit while remaining in control of its own future.

Raghwa Gopal stated that health transformation is not about deploying new technology but about creating a healthcare ecosystem where trust, sovereignty, integrity, collaboration, and innovation reinforce one another, allowing every community to benefit while remaining in control of its own future .

Nalini Saligram describes Arogya World's M Diabetes programme, which uses WhatsApp-based messaging augmented with AI and multimedia to promote lifestyle changes for diabetes prevention. The programme has reached 29.5 million people across rural and urban India over 15 years, demonstrating that digital health interventions can achieve significant scale.

Nalini Saligram described the M Diabetes programme, which sends 62 messages twice a week over six months via WhatsApp, now augmented with AI and multimedia, to people who are healthy as well as those with diabetes . She noted that Arogya World has reached 29.5 million people over 15 years with their programmes across rural and urban India .

Nurain Janah argues that small island states face distinctive health challenges arising from being on the front line of climate change, which must be factored into any healthcare model adapted for these communities. She advocates for holistic and preventative approaches rather than purely symptomatic treatment.

Nurain Janah highlighted that small island states face health impacts from being at the front line of climate change globally, and that this health impact view is really important . She argued that adaptation should include both preventative and holistic approaches rather than medicating at a symptoms level .

Nurain Janah raises the importance of preserving and respecting traditional healthcare knowledge that has existed for centuries as digital health systems are introduced. She argues that communities must retain ownership and intellectual property rights over their traditional knowledge and benefit from it.

Nurain Janah noted that there is already traditional healthcare that has existed for many decades and even centuries, and raised the question of how to prioritise community knowledge in a way where the community has ownership and intellectual property ownership and benefits from that as well .

Nurain Janah describes the specific geographic challenge of the Maldives, which has nearly 1,200 dispersed islands where specialised healthcare is concentrated and complex procedures often require travel overseas. She calls for seamlessly connected healthcare that empowers local workers across the entire country.

Nurain Janah noted that the Maldives has almost 1,200 geographically dispersed islands, and while health centres exist across the country, specialised healthcare is concentrated and complex procedures often require going overseas . She asked how to empower healthcare workers and provide specialised care in ways that are seamlessly connected across the board .

Nurain Janah argues that small states deploying digital health systems still have to invite global vendors, creating a power imbalance. She calls for capacity building and the ability to negotiate interoperable, non-extractive systems from a position of empowerment rather than resource and power asymmetry.

Nurain Janah noted that even where small states like the Maldives have launched digital health blueprints, they still have to invite vendors from globally . She called for capacity building and the ability to negotiate interoperable systems that are not extractive but adapted to local context, and for empowerment to make those decisions .

Juliana Haimbodi describes Namibia's healthcare challenge, where a population of 3.1 million is dispersed across a vast geographic area but most healthcare professionals are concentrated in urban centres, leaving rural areas poorly served. She emphasises that digital health should complement rather than replace healthcare professionals, addressing stereotypes about digitalisation taking jobs.

Juliana Haimbodi noted that Namibia has a population of 3.1 million dispersed across a vast geographic area, with most healthcare professionals concentrated in urban centres, leaving rural areas poorly attended . She emphasised that digital health should not replace healthcare professionals but rather complement them, as there is a stereotype in Namibia that digitalisation takes jobs .

Juliana Haimbodi argues that digital health systems must ensure data is securely exchanged across health institutions with the highest level of privacy, remaining within the host country rather than flowing to foreign servers. She also highlights the need for investment in digital infrastructure and connectivity, particularly in rural areas, as well as digital literacy for healthcare workers.

Juliana Haimbodi stated that the digital health system should save data securely exchanged across health institutions with the highest level of data privacy, not flowing to foreign servers but remaining within the host country, along with the highest level of cybersecurity . She also noted the need to invest in digital infrastructure and connectivity, as there are still challenges with internet access in rural areas in Namibia, as well as digital literacy for healthcare workers .

Amit Rana argues that discussions about the future of healthcare often focus on technology and consumers while neglecting the care providers who are the most critical and constrained resource, particularly in rural and remote indigenous communities. He emphasises that supporting clinicians' mission is essential to delivering better clinical outcomes.

Amit Rana stated that when discussing the future of healthcare, there is a tendency to focus on technology and consumers, but care providers are the health system's most critical and constrained resource, particularly in rural and remote indigenous communities . He noted that medicine is a mission-driven profession built on service and human connection, and that supporting this mission means enabling clinicians to work more effectively .

Amit Rana argues that the Healthcare Without Borders model has the potential to transform care for marginalised communities by replacing fragmented and episodic care with connected and continuous care. He notes that co-designing care with communities and clinicians and embedding cultural safety builds trust and encourages earlier utilisation of healthcare services.

Amit Rana stated that the model has the potential to replace fragmented care with connected care and episodic care with coordinated and continuous care, which closely aligns with the clinical mission . He noted that co-designing care with communities and clinicians and embedding cultural safety and shared ownership builds trust and increases confidence for early utilisation of healthcare services .

Amit Rana argues that a well-designed healthcare infrastructure can significantly improve the working lives of clinicians by reducing workflow friction, integrating technology better, connecting clinicians to specialist support, lessening burnout and attrition risk, reducing non-clinical time, and supporting career development through continuous learning.

Amit Rana outlined a range of benefits for clinicians from a well-designed system, including reducing workflow friction, integrating technology better, connecting clinicians to specialist support or multidisciplinary approaches, lessening burnout and attrition risk, reducing non-clinical time, eliminating professional isolation, lowering cognitive load, and supporting career development through a continuous learning mentorship ecosystem .

Amit Rana argues that the greatest opportunity of the healthcare system is to reimagine both providers and communities as close partners and collaborators working towards shared goals. By helping clinicians fulfil their responsibilities and mission, the system can strengthen the culture of care, improve patient experience and outcomes, and build healthier communities globally.

Amit Rana stated that the greatest opportunity for the system is to reimagine both provider and consumer communities as close partners and collaborators working towards shared goals . He argued that by helping clinicians fulfil their responsibilities and mission, the system can strengthen the culture of care, improve patient experience and outcomes, and build healthier communities across the globe .

Amit Rana argues that when Commonwealth leaders come together, they must recognise that member states are at very different stages of digitalisation and data governance. He advocates for a more collaborative and empathetic approach that creates clusters and addresses divergence within the group, rather than applying sweeping uniform guidelines.

Amit Rana noted that most member states are at different stages of digitalisation and data governance, and that one sweeping set of guidelines will not address that . He suggested creating more clusters and being more empathetic to both scaling up and unscaling at the same time as a better leadership approach .

The Participant highlights that approximately 56 heads of government from Commonwealth nations, including Canada and the Maldives, will be convening in Antigua and Barbuda in early November. By framing this as an opportunity to deliver a direct message to these leaders, the Participant implicitly argues that multilateral political engagement at the highest level is essential for advancing the goals of the Healthcare Without Borders initiative.

The Participant noted that in about 100 days, 56 government leaders from the Commonwealth, including from Canada and the Maldives, would be coming together, and asked panelists what their one ask would be if they were in the room with those heads of government .

Speaker 1 identifies that the echo problem is being caused by participants having their speaker volume on, and suggests that rather than waiting for the problem to persist, organisers should proactively instruct all participants on how to manage their audio settings. This reflects a practical approach to ensuring the session can proceed smoothly and inclusively for all attendees.

Speaker 1 identified that having the sound on causes audio to play from the speaker, creating an echo feedback loop, and suggested turning the volume down as the solution . Speaker 1 then proposed that organisers tell people to do that and give them instructions to resolve the issue .