Terms of Reference: Organisation to support/test national implementation of a model law on health data governance (in Senegal, Côte d’Ivoire, Cameroon, and/or South Africa)

Details of work required: We are recruiting an organisation(s) to support the process to test the national implementation of the model law on health data governance in Senegal, Côte d’Ivoire, Cameroon, and/or South Africa. This will entail supporting/overseeing the process (based on a defined approach), convening government and other national stakeholders, in addition to developing a use case(s) for its implementation. A model law implementation guide is currently being developed, which would also support this. We welcome proposals for a single country or up to three of the listed countries. 

Expected duration: the work should be carried out between ~26 August and 16 December 2024

 

Background

To fully harness the potential of health data for public benefit and improved health outcomes, while also managing risks, protecting individual rights, and ensuring people’s data is protected from misuse, it is important to strengthen the governance of health data through more robust, effective and equitable legislation and regulations. While several countries and regions are taking steps to address this, approaches vary. By countries and other stakeholders coming together, this provides an opportunity to learn from and build on experiences and good practices, and establish a level of consensus around the essential provisions that should be addressed through national legislation.

Transform Health and partners, including AeHIN, HELINA, RECAINSA, OECD and Africa CDC, have supported the development of a draft Model Law on Health Data Governance, which articulates core elements, legislative guidance and reference legal text to strengthen national frameworks, recognising the critical importance of strengthening health data governance for improved health outcomes and UHC. The model law seeks to set a global standard for health data legislation. It aims to build consensus around core areas that should be addressed through national legislation; establish a level of compatibility across countries to foster greater legal coherence across jurisdictions, which is important to facilitate cross-border data sharing; and importantly to serve as a resource for governments. As a Model Law, it serves as a blueprint, a flexible framework, that can be adapted to suit the legal systems of different countries. It doesn’t aim to be prescriptive or imposing in any way, but rather serves as a legislative guide and resources that can be used by countries (fully or in part) to strengthen national laws and frameworks on health data governance.

The draft model law is informed by equity and rights-based principles (endorsed by more than 150 organisations and governments), and draws inspiration from the national legislative and regulatory landscape reviews of more than 30 countries, the OECD Recommendation on Health Data Governance (adhered to by 38 OECD member countries), among other national, regional and international instruments, commitments and best practice. It has been developed through a bottom up, consultative process, engaging nearly 1000 stakeholders from across the globe, including through more than 20 national, regional and youth consultations, expert interviews, and a widely disseminated survey to gather feedback on the draft.

The purpose of testing implementation of the model law is to explore and assess how it can be implemented in practice within countries. This would establish practical use cases for its implementation. Through this process we also aim to build further support and buy-in for the model law, both as a resource to support in strengthening national frameworks, as well as for its endorsement by governments through a World Health Assembly resolution and regional mechanisms. A model law implementation guide (containing guidance, options and scenarios for implementation) is also being developed, which would support this implementation exercise. 

 

Scope of work

In support of this work, Transform Health is seeking to recruit an organisation(s) to lead the process to test the national implementation of the model law on health data governance in Senegal, Côte d’Ivoire, Cameroon, and/or South Africa (this could be for a single country or up to three of the listed countries). This will include the following key activities:

  • Review and ensure a thorough understanding of the model law and its contents and provisions, including the health data governance principles that underpin it, and its intended use and outcomes.
  • Review other documents related to the model law (e.g. on its development; reports from consultations on the model law; national legislative and regulatory landscape assessments; etc) and speak to key people involved in its development to provide further context and fill in any gaps from the information above.
  • Understand the proposed approach to be carried out for the testing/practical implementation of the model law, including the objectives, parameters, timelines, key stakeholder groups to be engaged as part of the process, and steps to be carried out. This may be tailored to the national context in discussion and agreement with Transform Health.
  • Test the practical implementation and applicability of the model law on health data governance in one (or up to three) countries, based on the proposed approach, and using the implementation guide. This may include:
    • Identifying and reaching out to key national stakeholders, partners and government counterparts to support and participate in the process, including defining roles and responsibilities. The identified stakeholders and partners should be engaged throughout the process to ensure national buy-in and ownership.
    • Speaking to experts, regulators and other government and non-governmental stakeholders in the country to complement the research and understand relevant perspectives and needs to support the practical implementation of the model law.
    • Convening key government (and other) stakeholders and national working groups to discuss and validate the findings of the landscape assessment and to develop a roadmap (a way forward) for the country of how the recommendations can be implemented in practice, ensuring this is validated and has buy-in of national stakeholders.
  • Write up a final report documenting the approach/process, outcomes, learnings, and recommendations, including a use case for the country that also sets out the respective roadmap. 

The organisation will work closely with Transform Health, the legal team providing backstop support, the Africa CDC flagship initiative on Health Data Governance (which is co-chaired by Transform Health and Pan African Health Informatics Association/HELINA), and other key regional and national partners, as relevant. 

 

Key deliverables and deadlines

  1. Approach and plan to be carried out for the national testing of the model law, including the objectives, parameters, timelines, key stakeholders to be engaged as part of the process (including defining roles and responsibilities), and steps to be carried out (based on a proposed template plan that will be provided). Deadline: 20 September 2024.
  2. Test implementation of the model law based on the approach/plan. Deadline: Deadline: 15 November 2024.
  3. Roadmap outlining a way forward for the country of how the model law can be implemented in practice (validated by government and other national stakeholders. Deadline: 1 December (TBC depending on testing timelines).
  4. Final report documenting the approach/process, outcomes, learnings, and recommendations, including country use case that also sets out the respective roadmaps. Deadline: 16 December.

 

Timelines 

  • RFP published: 12 August 2024
  • Deadline to submit proposals for consultancy: 19 August 2024  
  • Consultant selected: 22 August 2024
  • Consultancy start date: ~26 August 2024
  • Deadline for completion of work: 16 December 2024

 

Profile and experience 

We are looking for an organisation with a national or regional footprint with expertise in the areas of health, data governance, or specifically health data governance. We are particularly interested in an organisation with experience convening consultative processes on policy issues (ideally health policy). The organisation should ideally have experience engaging with national government stakeholders, including those involved in legislative and regulatory processes, and the ability to engage diverse stakeholders in such processes.  The organisation should have strong research and analytical skills, with the ability to synthesise findings and make clear recommendations. Regulatory/legislative expertise (e.g. in analysing, revising and drafting national laws and regulations and/or related frameworks) would be an asset. Preference will be given to organisations based in the listed countries or with a regional remit.

 

Remuneration

The proposed budget for this assignment is approximately US$12,000 per country (to be agreed based on experience and the proposal). We welcome  proposals for up to three countries, including Senegal, Côte d’Ivoire, Cameroon, or South Africa.

 

Application process 

To apply, please submit the following to [email protected]  by 09:00 CET on 19 August 2024: 

  • Your organisational profile, CV(s) of relevant colleagues, 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.

 

About Transform Health 

Transform Health is a global coalition of organisations dedicated to achieving health for all in the digital age. Transform Health sets out to build a global movement that brings together organisations and institutions across different sectors, committed to achieving universal health coverage by 2030 by expanding the use of digital technology and increasing access to data. We campaign and collaborate with the individuals, communities, governments, organisations and institutions that are most affected by the lack of access to equitable, affordable and high-quality healthcare.