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


Innovation Network Global (ING), Innovation Network Canada, Dynamic Coalition on Emerging Technologies, UN IGF

Session 488

Friday, 10 July 2026 10:00–10:45 (UTC+02:00) Physical (on-site) and Virtual (remote) participation Room E, Palexpo Interactive Session
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Physical (on-site) and Virtual (remote) participation


Health data is among the most economically and politically valuable data a population produces. Most national health digitization programs are built on infrastructure that sends that data to foreign cloud providers and foreign jurisdictions, where it is monetized by others. Communities and countries that digitize early are increasingly locked into systems that are difficult to unwind, with the economic, privacy, and sovereignty losses compounding over time.

Healthcare Without Borders (HWB) is an architecture for sovereign, community-owned health systems built around a different principle: clinical intelligence and patient records remain on community-controlled devices, with no foreign cloud dependency and no foreign jurisdiction with legal access. The platform delivers AI-powered clinical decision support, patient history, disease monitoring, and diagnostic guidance through tablets and phones, working fully on-device and without requiring internet connectivity. It includes a patient-facing Wellness App and Personal Health Record, giving individuals direct tools to manage their own health. Capacity building is embedded from the outset, with local health workers, administrators, and technical staff trained to operate the system independently.

The first deployment is being prepared with the Tsleil-Waututh Nation in North Vancouver, Canada — what will be Canada's first sovereign AI-enabled Indigenous health system. The architecture has drawn early interest from other communities and countries operating under similar conditions, including Namibia and the Maldives, where dispersed populations, connectivity gaps, and pre-digitization positions make the model directly applicable.

A second governance gap sits underneath sovereignty. Current privacy frameworks are built around the individual: consent, individual access, individual control. But health data is fundamentally collective. The patterns that emerge from a community's records — disease prevalence, treatment outcomes, environmental health exposures — describe the community itself, not any single person. Once aggregated, that data shapes decisions affecting everyone in the community, regardless of whether individuals consented to be part of the aggregate. Individual-level frameworks do not address collective harms or collective rights. This is the collective privacy gap.

The session brings together Indigenous leadership, privacy research, governance expertise, and emerging international partners to surface what sovereign, community-owned health systems require — and what current data protection frameworks do not yet provide. The collective privacy framework developed with the World Privacy Forum, alongside the Indigenous data sovereignty principles guiding the TWN deployment, offers a different starting point — one in which collective rights, not individual consent alone, define the terms of governance.

The session will produce a replication framework, submitted as a contribution to the WSIS Action Line C7 E-Health roadmap, setting out the architectural and governance principles for sovereign health systems and the pathways for replication in Indigenous, remote, and underserved communities globally.

Panellists
Dr. May Siksik
Dr. May Siksik CEO Innovation Network Global, Canada Moderator

Dr. May Siksik is Chief Executive Officer of Innovation Network Global, a Canada-headquartered organization advancing system-level innovation in artificial intelligence, quantum technologies, digital health, and digital infrastructure through technology platforms, governance frameworks, and multi-stakeholder initiatives. She co-chairs the Dynamic Coalition on Emerging Technologies at the United Nations Internet Governance Forum (IGF), leads the Global Quantum and Exponential Technologies Education Initiative (GQEI) in partnership with UNESCO's International Year of Quantum, and founded Healthcare Without Borders, a global initiative building sovereign, AI-enabled health systems for Indigenous, remote, and underserved communities.

Dr. Siksik is a delegate to ISO/IEC JTC 3 on Quantum Technologies and liaison to ISO/IEC TC 62 on medical devices and software. She is a member of the OECD Global Forum on Technology Focus Group on Quantum Technologies, serves on the Board of NGen Canada, and is Vice Chair of the Board of CMC Microsystems. She previously chaired Canada's National Research Council Applied Quantum Computing Challenge Program Review Committee.

Through her work, Dr. Siksik brings together industry, government, academia, and civil society to design governance frameworks, develop deployable technologies, and translate emerging technologies into practical solutions for complex real-world challenges.


Mr. Dino Dell'Accio
Mr. Dino Dell'Accio Deputy CEO and CIO UNJSPF Moderator

Deputy Chief Executive with a distinguished United Nations career spanning roles as Chief IT Auditor

and Chief Information Officer, bringing extensive, multi-year hands-on experience designing, governing,

and assuring Information Systems, Blockchains, Distributed Ledger Technologies, and Digital Identity

solutions underpinning United Nations Global Operations and Critical Infrastructure.

Brings deep practical expertise in information security assurance aligned with international standards,

including the assessment, identification, and mitigation of emerging cryptographic threats — with

particular focus on post-quantum computing risks to blockchain-based and distributed systems.

Applies rigorous, standards-based methodologies to evaluate cryptographic resilience, inform

remediation roadmaps, and future-proof mission-critical infrastructure against evolving threat

landscapes.

Committed to responsible and ethical design, use, and assessment of emerging technologies, to serve the

broader goals of the United Nations, organizational integrity, and societal benefit.

Led the achievement of the first United Nations ISO/IEC 42001 certification, establishing a landmark

standard for the responsible and ethical use of Artificial Intelligence across UNJSPF operations.

Dedicated to compliance with international standards and professional best practices for governing,

managing, auditing, and securing global information systems and protecting data and privacy —

including ISO/IEC 27001 (Information Security Management), ISO/IEC 27701 (Personal Identifiable

Information Management), and ISO/IEC 42001 (AI Management Systems).

 


Ms. Nicholas Kofi
Mr. Nicholas Kofi Councillor Tsleil-Waututh Nation, Canada Remote Panellist

Councillor Nicholas Kofi is an elected member of Council for the Tsleil-Waututh Nation (səlilwətaɬ), where he is committed to advancing community well-being, cultural revitalization, and Indigenous self-determination. A lifelong member of the Nation, he has held leadership roles from the Youth Committee through to Council, building a strong foundation in community engagement and service.

Nicholas worked for eight years with the Nation’s Language Team, supporting the revitalization of hən̓q̓əmin̓əm̓ and helping preserve Indigenous language and cultural knowledge for future generations. He has also contributed to Indigenous language revitalization initiatives through the Sníchim Foundation and served on the Nation’s Lands Advisory Committee and the Board of the Maplewood Mudflats, supporting environmental stewardship and cultural connection to traditional territories.

In his role as an Indigenous Support Worker, Nicholas works directly with youth, helping them navigate education and life while remaining grounded in their identity, culture, and community. Through his leadership, he advocates for transparency, accountability, and the protection of Indigenous rights, culture, and knowledge systems. At WSIS, he brings the perspective of Indigenous governance and community-led approaches to data sovereignty, digital innovation, and health system transformation.


Mr. Robert Barlett
Mr. Robert Bartlett Chief Administration Officer Tsleil-Waututh Nation, Canada

Robert Bartlett is Chief Administrative Officer of the Tsleil-Waututh Nation (səlilwətaɬ), where he leads organizational transformation, strategic planning, and major Nation-wide initiatives supporting self-determination, community well-being, and sustainable development. Working closely with the Nation's Chief and Council, he has helped advance a renewed focus on health and wellness, organizational restructuring, and long-term capacity building, while overseeing major initiatives including Inlet negotiations, the Nation's Truth Document, and planning related to the FIFA World Cup.

With more than two decades of leadership experience across Indigenous, municipal, provincial, and federal government organizations in Canada and the United Kingdom, Robert brings expertise in public administration, risk management, stakeholder engagement, and strategic governance. Prior to joining Tsleil-Waututh Nation, he served as Chief Administrative Officer for the District of West Vancouver, Chief Risk Officer for the City of Vancouver, and held senior leadership roles with the UK Cabinet Office supporting both the UK Government and NATO. He also contributed to the delivery of two Olympic and Paralympic Games.

Robert is committed to building resilient, community-led systems that prioritize health, safety, transparency, and environmental stewardship. At WSIS, he brings the perspective of Indigenous governance and leadership in advancing sovereign, community-owned approaches to health, data, and digital infrastructure.


Dr. Raghwa Gopal
Dr. Raghwa Gopal Chair of the board at Jim Pattison Centre for Health Systems Learning and Innovation and Co President of the BC India Business Network Jim Pattison Centre for Health Systems Learning and Innovation, BC India Business Network, Canada Remote Panellist

Raghwa Gopal is a technology executive, entrepreneur, and innovation leader with more than four decades of experience driving digital transformation, emerging technologies, and innovation-led economic development. He has founded and scaled multiple technology companies and has held senior leadership positions across the public and private sectors, including serving as President and CEO of Innovate BC, where he helped advance British Columbia's innovation ecosystem and support the commercialization of emerging technologies.

Raghwa currently serves as Chair of the Jim Pattison Centre for Health Systems Learning and Innovation and Co-President of the BC India Business Network. He previously served as Vice Chair of the University of British Columbia Board of Governors and has worked extensively at the intersection of technology, healthcare, research, and public policy. Throughout his career, he has championed innovation that delivers measurable societal and economic impact.

At WSIS, Raghwa brings a health systems and innovation leadership perspective on the adoption of emerging technologies, the modernization of healthcare delivery, and the governance frameworks needed to translate technological advances into scalable, real-world outcomes.


Ms. Nurain Janah
Ms. Nurain Janah Founder and Chair of the Kandūfā Foundation, Group Vice Chair of JIH Global and HARIM Group, Adviser on Small States for the Commonwealth Businesswomen's Network, Chairperson of the Board of Maldives Airports Company Limited (MACL) Kandūfā Foundation, JIH Global and HARIM Group, Commonwealth , Maldives Airports Company Limited (MACL), Maldives, Africa

Nurain Janah is an entrepreneur, governance leader, and systems-change advocate working at the intersection of technology, sustainability, finance, and inclusive development. She is Founder and Chair he Kandūfā Foundation, which advances initiatives connecting cultural heritage, technology, and climate resilience to support sustainable futures.

Nurain serves as Group Vice Chair of JIH Global and HARIM Group, a diversified international enterprise with interests spanning hospitality, infrastructure, real estate, and investment. She also played a leading role in the establishment of Maldives Premier Bank, contributing to the development of financial infrastructure and investment capacity in the Maldives. In 2025, she became the first woman appointed Chairperson of the Board of Maldives Airports Company Limited (MACL).

A Chartered Accountant and governance expert, Nurain has founded and advised organizations focused on ESG strategy, corporate governance, online safety, women's economic empowerment, and inclusive technology. She serves as Adviser on Small States for the Commonwealth Businesswomen's Network and has contributed to international initiatives on technology governance and digital trust. Recognized as a World Economic Forum Young Global Leader (Class of 2025), she is committed to ensuring emerging technologies create opportunities for communities historically excluded from digital systems.

At WSIS, Nurain brings the perspective of small-island states and emerging economies on digital sovereignty, inclusive innovation, and the governance frameworks needed to ensure technology serves community development and long-term resilience.


Ms. Pam Dixon
Ms. Pam Dixon CEO World Privacy Forum

Pam Dixon is the founder and executive director of the World Privacy Forum. For more than two decades, Dixon has conducted original research on the privacy and governance of complex data ecosystems at scale. Her work spans AI and machine learning governance, identity systems, and health data, and encompasses extensive field research and policy engagement across more than 85 jurisdictions, with sustained engagement in the US, India, Africa, Asia-Pacific, and the EU.

Dixon was among the original appointees to the OECD AI Expert Group that drafted the OECD AI Principles, and continues to serve as chair of the civil society advisory group for OECD's Digital Policy Committee and its AI Governance Working Party. She is a member of the OECD-GPAI Steering Committee. She is a board advisor to the WHO's Health Data Collaborative and a member of its Data Governance WG. She co-chaired the UN Statistical Commission's Data Governance and Legal Frameworks WG, a task force focused on governance of National Statistical Offices. Dixon is a principal investigator at the NIST AI Consortium and an invited expert to ITU Study Group 17. In other work, she teaches courses in global AI policy, data governance, and identity ecosystems at Carnegie Mellon University.

Her peer-reviewed field research on India's Aadhaar biometric identity system, A Failure to Do No Harm, conducted over four years and published in Springer Nature in 2017 – was cited twice in the Supreme Court of India's landmark Aadhaar privacy decision. Her 2014 report The Scoring of America, co-authored with Robert Gellman, was among the first major analyses of predictive analytics and machine learning through a privacy and governance lens. In 2023, she co-authored Risky Analysis, the first comprehensive global review and index of AI governance tools. In 2025, she completed a comprehensive global comparative study of national AI strategies, now visualized online.

Dixon's current research addresses the governance of advanced AI systems. Her current theoretical work has been presented at the Privacy Law Scholars Conference (2024, 2026) and to European Data Protection Authorities at their Spring Conference (2025). This work has now been peer reviewed and accepted for publication in a forthcoming Springer book on AI governance and trust. She is the author of ten books and is the recipient of the EFF Pioneer Award for groundbreaking research on privacy and data ecosystems.


Dr. Luigi Serio
Dr. Luigi Serio Principal Scientist and Project Leader CERN

Dr. Luigi Serio, a Principal Scientist and Project Leader in the Technology Department at CERN, Geneva, holds an MSc in Nuclear Engineering from Politecnico di Milano and a PhD from Cranfield University. His research spans international projects in AI, nuclear fusion, and particle accelerators. Dr. Serio actively participates in several international technical and advisory committees, including SLAC LCLS-II, Fermilab PIP-II, DUNE, MADMAX, and the ESOC AI Committee. 

Dr. Serio has authored over 150 publications in the fields of nuclear engineering, cryogenics, and AI technology.


Ms. Juliana Haimbodi
Ms. Juliana Haimbodi Councillor Ongwediva Town Council, Namibia Remote Panellist

Councillor Juliana Haimbodi is a public-sector leader serving on the Ongwediva Town Council in northern Namibia, where she currently chairs the Council's Management Committee. In this role, she helps shape policies and initiatives that support sustainable urban development, economic growth, and improved quality of life for residents.

In addition to her work in local government, Councillor Haimbodi has experience in the private sector and has contributed to national economic development through her service on the executive committee of the Namibia Chamber of Commerce and Industry. She has championed initiatives focused on youth empowerment, entrepreneurship, and the growth of small and medium-sized enterprises.

Passionate about community development and inclusive growth, Councillor Haimbodi is committed to building partnerships across government, industry, and civil society to create opportunities and strengthen the resilience and well-being of communities.


Dr. Nalini Saligram
Dr. Nalini Saligram Founder and CEO of Arogya World Arogya World, India Remote Panellist

Nalini Saligram, Ph.D., is the Founder & CEO of Arogya World (arogaworld.org), a global health
non-profit committed to preventing diabetes through healthy living. She is an Ashoka Fellow and
a sought-after speaker.
Under Nalini’s leadership, Arogya World designs and implements scalable, science-based
diabetes prevention programs in India and takes prevention to people where they live, learn and
work (doorstep health model). The organization has reached nearly 30 million people in India
(through 2025) and is now actively involved in scaling. As a tireless advocate for
noncommunicable disease prevention, Nalini leverages public-private partnerships and global
platforms to improve the world we live in. On her watch, Arogya World has made and fulfilled
multiple Clinton Global Initiative Commitments, and was named a finalist for the Peter F.
Drucker Award for Nonprofit Innovation (2014). The nonprofit got a United Nations InterAgency
Taskforce and WHO award in 2022 for strengthening India's primary healthcare system and a
Google AI for Social Good award in 2021. Arogya is also bringing its programs to the US as
well, with a focus on youth outreach and lifestyle change. Her story and that of Arogya World
have been highlighted in a book – The Healthcare Gamechangers.  
Nalini has lived and worked in many parts of the world. She has a Ph.D. in biochemistry from
the Indian Institute of Science, Bangalore. She serves on the boards of TiE-Atlanta and India
Philanthropy Alliance, and is active with Indiaspora and the Global Centre for Healthy
Workplaces.


Dr. Amit Rana
Dr. Amit Rana Neuro-Trauma critical care surgeon and Health Tech Founder Datavaccinator, Australia

Dr Amit Rana is a cross-sectoral board advisor and member, operator-investor, and Neuro-Trauma critical care surgeon operating across North America, Europe, India, Australia, and the GCC. He engages across the public sector, industry, and innovation ecosystems, supporting organisations to innovate and navigate health systems, autonomous systems, space technologies, data sovereignty, and deep-tech sectors by synthesising global collaborative networks, technology, capital, governance, and geopolitical dynamics.
A senior executive fellows of Harvard Kennedy School, and alumnus of Columbia business school, Dr Rana serves on global boards and leadership councils and contributes to AI think tanks and innovation ecosystems, bringing an integrated, human-centred perspective to growth, innovation, strategic risk, and long-term value creation.


Topics
Artificial Intelligence Cybersecurity Digital Inclusion Emerging Technologies Ethics Health Human Rights
WSIS Action Lines
  • AL C3 logo C3. Access to information and knowledge
  • AL C5 logo C5. Building confidence and security in use of ICTs
  • AL C7 E–HEA logo C7. ICT applications: benefits in all aspects of life — E-health
  • AL C10 logo C10. Ethical dimensions of the Information Society

The session is anchored in WSIS Action Line C7 E-Health. The Healthcare Without Borders architecture and its first deployment with the Tsleil-Waututh Nation directly address the question of how digital health infrastructure can be built in ways that serve communities without surrendering sovereignty, privacy, or economic control over health data. C3 is addressed through the architecture's no-connectivity-required design, which extends access to clinical intelligence in remote and underserved communities where existing health infrastructure is absent. C5 is implemented through the on-device, no-foreign-cloud design and the encryption and governance layers that hold all data under community control. C10 is addressed through the explicit ethical framing of the deployment — Indigenous data sovereignty principles, collective privacy rights, and community ownership of clinical AI — and through the collective privacy framework developed with the World Privacy Forum.

Sustainable Development Goals
  • Goal 3 logo Goal 3: Ensure healthy lives and promote well-being for all
  • Goal 5 logo Goal 5: Achieve gender equality and empower all women and girls
  • Goal 9 logo Goal 9: Build resilient infrastructure, promote sustainable industrialization and foster innovation
  • Goal 10 logo Goal 10: Reduce inequality within and among countries
  • Goal 16 logo Goal 16: Promote just, peaceful and inclusive societies
  • Goal 17 logo Goal 17: Revitalize the global partnership for sustainable development

The Healthcare Without Borders architecture directly serves SDG 3 by extending clinical intelligence and continuous care to communities currently outside reliable healthcare infrastructure. SDG 5 is addressed through the patient-facing Wellness App and Personal Health Record, which give women in remote and underserved communities direct tools to manage their own health, and through the framework's explicit attention to gendered dimensions of health data and care. SDG 9 is served through the deployment of sovereign, community-owned digital infrastructure designed for communities that have not previously had access to it. SDG 10 is addressed through the focus on Indigenous, remote, and underserved communities — populations consistently left behind by conventional health digitization. SDG 16 is implemented through governance grounded in Indigenous data sovereignty principles and collective privacy rights, providing a model in which institutional accountability is embedded in the architecture itself. SDG 17 is served through the partnership structure that brings together Indigenous leadership, an international privacy research organization, international technical and scientific collaborators, and UN-affiliated governance partners.

GDC Objectives
  • Objective 3: Foster an inclusive, open, safe and secure digital space that respects, protects and promotes human rights
  • Objective 4: Advance responsible, equitable and interoperable data governance approaches
  • Objective 5: Enhance international governance of artificial intelligence for the benefit of humanity
Links

https://www.innovationnetwork.global/