Health Data Governance in East, West and Central Africa

Request for Proposals

Transform Health is commissioning a piece of research on the state of health data governance in the East, West and Central Africa region. The purpose of the research is to inform regional advocacy and engagement on this issue, the development of the regional mobilisation strategy, to assess the impact of the My Data Our Health campaign over time and provide a repository of information that can be used to develop briefings and key messages for partner engagement with governments and regional bodies.

 

Context of Data and its Governance

Digital transformation is synonymous with computational capacities to collect, store, and analyse vast amounts of personal data. This data can be used to mount more effective responses to the health needs of a population. It can also be used to marginalise and exclude certain groups from health benefits (such as health insurance) or services (sexual and reproductive health and rights), or to deepen social surveillance and control.
Current public debates around data governance focus on issues of individual privacy and data security. However, when it comes to health we need to balance individual privacy and security with the health needs of the population. The health data of each one of us holds the key to the well being of others.

 

Transform Health’s objectives on health data governance

Transform Health is calling for a global health data governance framework, underpinned by equity and human rights based principles, to be developed and adopted by governments. To ensure this happens, we ideally need governments to support and adopt a World Health Assembly resolution mandating the WHO to develop a global framework. It is important that such a framework is developed through an inclusive, multistakeholder process. Once adopted, we ultimately want to see a global framework adapted and domesticated at regional and national levels and translated into national regulation/legislation.
Towards this goal, we have worked with partners to steward the development of a set of equity and human rights-based Health Data Governance Principles, which are oriented towards supporting sustainable and resilient public health systems that can deliver UHC. The Principles are a critical milestone and contribution towards the development of a global framework. Global alignment on a core set of principles and framework will promote a common understanding of what data governance should accomplish. It will support equitable and responsible health data management, while safeguarding data privacy, ownership, and security, creating an environment where all people and communities can share, use, and benefit from health data.
We are advocating at national, regional and global levels for commitments and action to strengthen the governance of health data. This includes engaging with national and regional decision makers and other stakeholders, as well as with relevant regional and sub-regional bodies, in East, West and Central Africa.

Public Mobilisation Campaign

Transform Health’s first public mobilisation campaign will be focusing on the issue of health data governance, a key policy area for the coalition over the coming years both in terms of our advocacy and popular mobilisation. This priority area fits within 2 the wider strategy of Transform Health to create an enabling environment for the digital transformation of primary health care systems, towards Universal Health Coverage (UHC), including building political will for action and advocating for increased investment. Digital transformation of health systems relies on the ability of digital technologies to collect, interpret and use, store and dispose of vast amounts of health data. The need to ensure the rights to privacy and security of individuals, while allowing health planners, providers and researchers to use this data for public good purposes is paramount.
On 16 Feb 2022, the Coalition hosted a workshop with 20 partners from 15 organisations from across 10 different countries (Indonesia, Bangladesh, India, Kenya, Senegal, Ghana, Spain, Switzerland, Guatemala, and USA) to develop the approach, narrative and key messages for the campaign. The campaign, entitled My Data Our Health, will seek to raise awareness and galvanise action on the issue of health data and to encourage a public and political conversation on the following set of questions:
  • Who determines how this data is collected, managed, used, stored and disposed of?
  • What are the limits of this authority?
  • How can we ensure this data is going to be used for public benefit purposes?
  • How much access and control do and should individuals have over their health data?
  • How can we ensure this ownership and control is respected and protected?
  • How to mitigate the effects of breaches and lost trust in case individual data privacy is compromised.
At the heart of this campaign is the question of building trust with those collecting and using our health data, and ensuring it is used to keep us healthy – now and in the future. Individuals should be able to understand their rights over personal data.
The underlying assumption of the campaign is that low levels of support for health data governance regulation stem from the lack of public and political understanding of the issue and therefore low demand on politicians, most of whom grew up in an analogue world, to act on it. This lack of public demand by the public on politicians to address this issue leads to weak political incentives to debate, sponsor and pass effective regulation.
As a result of this gap in the law or in the operationalisation of legislation, people face the risk that their health data may be misappropriated and used in ways they may disapprove of, while researchers and health managers are unable to leverage the potential of population health data to make new discoveries and to improve the system. My Data, Our Health campaign will raise public and political attention to this issue and encourage more effective political action by a more informed cadre of politicians. This will also provide the necessary support for a global health data governance framework to be adopted.

 

Health Data Governance Regional Engagement

Through both our regional advocacy and the public mobilisation campaign, we aim to engage national and regional bodies and mechanisms, such as the African Union, Africa CDC, East African Community, the East African Legislative Assembly, the ECOWAS Parliament, WAHO, national parliaments and WHO AFRO, to influence decision making, while ensuring the voices and perspectives of youth and marginalised communities are heard and taken into consideration when developing legislation. The My Data, Our Health campaign will complement regional advocacy and policy engagement by building a movement of concerned citizens to raise awareness of the issue among the general public, in order to put pressure on decision makers to take needed action. This includes engaging young people, women and marginalised groups to push for their digital rights to be protected and to demand action from governments.

 

Methodology Research for the landscape analysis should include the following:

– Key informant interviews with sufficient representation across the following types of stakeholders across the regions: Youth and Women-led Organisations, Civil society organisations, Government representatives, regional bodies, etc.

– A survey of youth women and marginalised community representatives.

– Mapping of relevant regional strategies, mechanisms, working groups, etc.

– A discourse analysis of media and social media.

– Secondary desk research.

– Policy analysis.

Deliverables

Report: The content of the report is expected to cover the four areas set out below:

Analysis of policy and regulatory landscape:

– An overview of regulation and legislation related to health data governance across the three regions with particular emphasis on Tanzania and Uganda in East Africa, and Senegal in West Africa. Regulation and legislation should be reviewed through the lens of the Health Data Governance Principles

– A recommendation of two additional countries in West and Central Africa that Transform Health should prioritise for its mobilisation campaign on health data governance. The recommendation from the research team should be based on criteria set out in the Appendix. These recommendations should be accompanied by an overview of the countries’ legislation and regulation on health data governance as above.

– An analysis of the current gaps in relation to health data governance at regional and national level in Tanzania, Uganda, Senegal and the two other countries in West and Central Africa recommended by the research team

– An analysis of the priorities, positions, guidance and strategies of different regional and sub-regional bodies and mechanisms as reflected in policy documents, plans, strategies, etc as it relates to health data governance, including any gaps (e.g. through the lens of the Health Data Governance Principles)

Analysis of the participation and inclusion of youth, women and marginalised communities in policy and regulatory processes: – Analysis of how the perspectives of youth, women and marginalised communities are or have been taken into account in the formulation of legislation and regulation and in the of the level of engagement of these cohorts.
An analysis of public attitudes and understandings of the issue of health data governance and establish a baseline for the mobilisation campaign: – An evidence based analysis (i.e. a baseline survey assessment) of the state of the current public debates/perceptions/understanding of health data governance across each of the different regions. – A survey of the perceptions and understandings of youth and women as it relates to health data governance.
A stakeholder and opportunities mapping – A stakeholder mapping and analysis of the most engaged stakeholder groups working on health data, data rights, data and/or health data governance. – An analysis of the different regional and pan African decision making bodies responsible to regulating on the issue of health data governance. – A mapping of key mechanisms, meetings and other opportunities to engage on this agenda.

Recommendations on longer term strategies for popular mobilisation in the particular regions.

  • The report should not exceed 35 pages in length excluding the Appendix. ○ One of the appendices should be a stakeholder mapping of the three different regions. ○ The other Appendix should distil the results of key informant interviews. ○ A mapping of existing health data governance related policies/legislation etc across the region including funds committed (if any), stage of implementation etc.
  • A short 5 page summary of key findings and recommendations should be produced.
  • A 10-15 slide deck of main findings and recommendations produced using Transform Health branding.
  • All raw copies of interviews as well as transcripts to be shared with Transform Health.

Timelines

Proposals should be submitted by 13th July to Transform Health at beatrice.okech@transformhealthcoalition.org . Selection will take place by 15 July. The first draft of the report should be completed by Wednesday, 21th August.

Appendix

Criteria for recommendation of priority countries in West and Central Africa Recommended countries should be assessed through a set of criteria that includes but is not limited to the following:

1. A low or middle-income country (LMIC) as classified by the World Bank.

2. Countries that have a certain amount of political freedom and where opportunities exist to influence policy change within our campaign timeline.

3. Political space for government engagement (assessed in relation to Freedom House’s Political Freedom Index).

4. Countries that have a certain amount of space for civil society to operate and hold decision makers to account as determined by the CIVICUS Monitor.

5. Human rights and the rule of law are respected, at least in principle, and there is very low risk to individuals or organisations of doing advocacy and campaigning. (https://worldjusticeproject.org/our-work/research-and-data/wjp-rule-law-inde x-2020 , https://freedomhouse.org/countries/freedom-world/scores )

6. Countries registering on the Global Connectivity Index and / or that score above 30 in the Mobile Connectivity Index. For countries with lower scores the campaign may be undermined by the wider issue of the need to scale up digital connectivity as a precondition for applying digital technology and data to any one sector.

7. Is there a digital health strategy based on an assessment of government documents published online.

Qualitative Key Informant Considerations

Additionally recommended countries should be put forward following quantitative key informant interviews with regional and national experts, with the following criteria:

8. Political leaders have already signalled their commitment to expand digital health but barriers to equitable implementation exist OR where advocacy is needed to increase political will.

9. Active and engaged civil society, particularly youth and women led organisations, already doing advocacy and campaigning on health issues.

10. The country is considered a regional thought-leader and projects influence to other countries in the region through its media, its academic institutions, regional organisations headquartered there, innovations taking place on the ground etc.

11. Countries where you believe a campaign such as Transform Health has the opportunity to make an impact both nationally and regionally. 12. Countries where there is donor interest and engagement and where they are likely to support government efforts to digitalise the health system to achieve UHC.