Terms of Reference: Consultant to update Transform Health’s health data governance tools to ensure their relevance in the rapidly evolving digital health and AI ecosystem

Details of work required: The consultant/organisation will review and update Transform Health’s health data governance tools (health data governance principles, Legislative Blueprint (Model Law) and Implementation guide,  legislative assessment tool, and technical support approach to ensure they remain relevant and aligned with the rapidly advancing digital health ecosystem, as well as recent frameworks, guidance and principles. This includes integrating considerations around artificial intelligence (AI), big data analytics, interoperability frameworks, and data sovereignty, while maintaining a strong equity and human rights focus. 

Expected duration: the work should be carried out between October and December 2026 (3 months).

Background

Stronger, more effective and equitable governance of health data and AI is needed to ensure we are fully harnessing its potential for public benefit, improved health outcomes and curbing the potential risks and harms of inadequate guardrails. Transform Health is leading efforts to strengthen health data governance legislative frameworks, working with and supporting governments, national partners, regional bodies, and other stakeholders to advance national, regional and global frameworks. 

We have also developed tools to support this, including the Health Data Governance Principles, which provide a shared, equity- and rights-based foundation for the governance of health data; the Legislative Blueprint (with an implementation guide), which provides a non-prescriptive resource setting out core legislative and regulatory components to support national and regional frameworks; a national legislative and regulatory landscape assessment tool to review and assess the legislative landscape; and technical support package to support country efforts. 

Transform Health is seeking to recruit a consultant/organisation to review and update these health data governance tools, to ensure they remain relevant and aligned with the rapidly advancing digital health ecosystem, as well as recent frameworks, guidance and principles. This includes integrating considerations around artificial intelligence (AI), big data analytics, interoperability frameworks, and data sovereignty, while maintaining a strong equity and human rights focus.

Scope of work

The consultant will review and update Transform Health’s health data governance tools, including reviewing and benchmarking them against other global and regional governance frameworks,  soliciting inputs from key stakeholders and experts, and validating the updated resource to ensure inclusivity and relevance. This assignment will include the following key activities:

• • Review and assess current tools: 
    • Review and ensure a thorough understanding of Transform Health’s health data governance tools. 
    • Review previously received feedback on the health data governance principles (this will be provided by Transform Health).
    • Assess the tools against emerging AI, big data analytics, interoperability and data sovereignty considerations to identify gaps and areas for improvement.
    • identify and review other global/regional/national health governance frameworks (e.g. Global Initiative on AI’s legislative framework, OECD Al Principles, WHO Al Principle,  European Union General Data Protection Regulation (GDPR), European Union Al Act , AU Data Policy Framework (2022) and Africa CDC digital transformation strategy, among other national, regional and international commitments and best practice, to identify gaps in Transform Health tools and specifications (e.g. principles, legislative provisions) to be included, building alignment with existing frameworks and good practice.
  • Stakeholder feedback:
    • Identify key stakeholders and experts to solicit inputs and feedback on what needs to be updated, as well as to review the updated tools (e.g. key endorsers of the principles, previous members of the Model Law Advisory Group, regulators, legal experts, civil society and private sector actors).
    • Draft and carry out a survey, and conduct KIIs (approx 15), to understand relevant perspectives and gather inputs from key stakeholders and experts. 
  • Update tools: 
    • Update Transform Health’s health data governance tools and national technical support approach based on the review/assessment, stakeholder and expert inputs, benchmarking and review of leading national  approaches. 
    • Circulate updated drafts of the tools for Transform Health feedback and selected external input, and incorporate feedback to finalise the documents.

Key deliverables and deadlines

Profile and experience

We are looking for a consultant with regulatory/legislative expertise in the areas of digital health, Al and health data governance. We are particularly interested in a consultant with experience in drafting and reviewing legislation/regulatory frameworks and tools. The consultant should have strong research and analytical skills, with the ability to synthesise findings and make clear recommendations. 

• • Advanced degree in public health, health policy, law, digital health, or related field.
  • Proven track record (10+ years) in health data governance, Al, digital health policy, or data protection law.
  • Demonstrated expertise in AI ethics, big data analytics, or emerging technologies in health.
  • Strong understanding of global, regional and national health data governance frameworks, guidance, principles, and approaches.  
  • Excellent analytical and writing skills with the ability to synthesise complex evidence and analysis.
  • Preference will be given to consultants/organisations based in low- and middle-income countries (LMICs), or with demonstrable experience working in LMIC contexts, to ensure the principles remain globally relevant and equitable.

Remuneration

The proposed budget for this assignment is approximately USD 10,000 (to be agreed based on experience and the proposal).

Application process 

To apply, please submit the following to hr@transformhealthcoalition.org by 09:00 CET on 21 September 2026: 

• Your CV and cover letter outlining your experience relevant to this consultancy.
• A brief proposal outlining your approach to this assignment.
• Your proposed daily rate and number of days to carry out this consultancy, including a breakdown by task/deliverable.

Transform Health is a global coalition of more than 230 organisations dedicated to achieving universal health coverage (UHC) by 2030 by harnessing digital technology and the use of data. We bring partners and networks together, leveraging our shared experience and expertise, to shape policy agendas, influence decision makers, develop tools, provide technical support to governments and others, and conduct research and analysis to deliver health for all in the digital age.