Strong legislative frameworks for health data governance are becoming essential to ensure that AI and digital health technologies remain trustworthy, equitable and rights-based, speakers said during a session at the WSIS Forum 2026.
The discussion brought together representatives from governments, international organisations, civil society and the private sector, who agreed that while AI and digital technologies are transforming healthcare, governance frameworks have not always kept pace. Speakers repeatedly argued that stronger legislation, greater international coordination and broader stakeholder participation will be necessary to build public trust and enable responsible data sharing across borders.
The session formed part of the WSIS Forum 2026, held in Geneva from 6 to 10 July. Co-organised by the International Telecommunication Union (ITU), UNESCO, UNDP and UNCTAD together with more than 50 UN organisations, the forum serves as one of the UN’s principal multistakeholder platforms for digital cooperation and sustainable development.
Trust begins with governance
Opening the discussion, Mathilde Forslund of Transform Health argued that health data has become the foundation of modern healthcare, powering everything from patient care and disease surveillance to AI innovation and health system planning.
However, she stressed that technological progress alone is insufficient.
‘Digital technologies and AI are transforming health systems rapidly, but these benefits will only be realised equitably and responsibly if governance keeps pace and public trust is maintained,’ she said.
Forslund argued that trusted governance requires legislation grounded in human rights, transparency and equity, alongside inclusive decision-making that informs citizens how their health data is collected, shared and protected. She also called for stronger national legal frameworks governing both health data and AI while encouraging greater regional and international alignment to prevent fragmented rules from undermining interoperability and cross-border cooperation.
Rather than starting from scratch, she noted that countries can already build on existing resources, including Transform Health’s Health Data Governance Principles, WHO guidance on AI, OECD recommendations and emerging regional initiatives such as the European Health Data Space (EHDS) and the Africa CDC’s work on continental health data governance.
National legislation provides legal certainty
Drawing on Zambia’s experience, Andrew Kashoka, Director of Information Technology at the Ministry of Health of Zambia, explained that governments increasingly recognise the need for legal certainty as digital health systems expand.
He argued that while policies and strategies provide direction, legislation ultimately establishes enforceable rights and obligations governing consent, privacy, accountability and access to health data.
‘Technology moves faster than policy and policy moves faster than legislation,’ Kashoka observed.
He described Zambia’s National Digital Health Strategy and the country’s participation in the WHO Global Initiative on Digital Health (GUIDE), noting that electronic health records, digital public infrastructure and AI all require strong legal foundations to maintain public confidence.
Kashoka also highlighted the Africa CDC’s continental health data governance framework, saying it provides African countries with shared principles that support legal interoperability, trusted cross-border collaboration, regional disease surveillance and responsible AI innovation.
Coordination, not policy, remains the biggest challenge
Several speakers suggested that governance challenges stem less from the absence of policies than from fragmented implementation.
Linda Bonyo, Founder of the Lawyers Hub and the Africa AI Policy Lab, argued that numerous organisations are already developing health data and AI governance initiatives, but often work independently with limited coordination.
She criticised the exclusion of parliaments and judicial institutions from governance discussions, arguing that legislators and courts play essential roles in creating and interpreting legal frameworks.
Bonyo also called for stronger institutional capacity, particularly among national data protection authorities that increasingly find themselves overseeing AI without sufficient technical expertise or financial resources.
She further highlighted practical barriers limiting African participation in international governance discussions, including visa restrictions and the high cost of attending Geneva-based meetings.
Summarising the challenge, Bonyo remarked that the problem is ‘not a policy problem… it’s implementation,’ urging countries to develop governance frameworks rooted in local realities rather than simply adopting foreign regulatory models.
Private sector and technical standards also matter
Representing the technical and private-sector perspective, Simão Ferraz de Campos Neto, Senior Counsellor at the International Telecommunication Union (ITU), argued that clearer rules and common technical standards are essential if health data is to be shared safely without discouraging innovation.
He noted that organisations frequently hesitate to share data not because they oppose collaboration, but because legal uncertainty creates concerns about liability.
Campos Neto called for interoperable technical standards, machine-readable datasets and standardised data-sharing agreements that could make trusted health data exchange significantly easier.
He also cautioned against treating AI as a single technology requiring uniform regulation.
Instead, he advocated proportionate, risk-based regulation that reflects the diversity of AI applications, while avoiding excessive regulatory burdens that could slow innovation.
Momentum builds towards global action
Closing the discussion, Jamal Alshanfari, Ambassador and Head of Oman Health office in Geneva, pointed to growing political momentum following discussions at the World Health Assembly, where member states expressed broad support for developing stronger global health data governance arrangements.
He identified four priorities for the next phase of work. The phases are expanding international consensus, strengthening national legislation and institutional capacity, providing practical implementation guidance, and ensuring that governments, civil society, academia, industry and end users all participate in shaping future frameworks.
Alshanfari also reminded participants that governance discussions should ultimately focus on those most affected by digital health technologies.
‘Everybody forgets about the end user,’ he said, stressing that trust depends on governance frameworks serving citizens as much as institutions.
In her closing remarks, Forslund said the discussion demonstrated encouraging progress across national, regional and global initiatives, while acknowledging that implementation remains the greatest challenge. She pointed to the upcoming World Health Assembly as an important opportunity to advance work on a possible global resolution on health data governance.
The session concluded with broad agreement that trusted AI in healthcare will depend not only on technological innovation but also on stronger legislation, greater international coordination, practical implementation, and governance frameworks that place citizens’ rights and public trust at their centre.
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