Campaign Benchmark Analysis: Health Data Governance in East, West and Central Africa
Request for Proposals
Transform Health is commissioning a piece of research on public knowledge, attitudes and understanding of the issue of health data governance in the East, West and Central Africa region. The purpose of the research is to provide a baseline for the My Data Our Health campaign and to scope the landscape to understand different stakeholders and opportunities for the campaign. The research will also be used to develop brieﬁngs and key messages for partner engagement with governments and regional bodies.
Research for the campaign benchmarking analysis should include the following:
- A stakeholder mapping of organisations representing youth, women and marginalised communities in Kenya, Tanzania, Uganda, Benin, Cote d’Ivoire and Senegal.
- Key stakeholder interviews to assess the state of the regulatory landscape across the different Does regulation exist (see links below), is it widely known, is it being implemented, is there an enforcement structure or mechanisms? These interviews should complement information already gathered from the regional landscape analyses.
- An assessment / discourse analysis of media and social media to provide a quantitative analysis that will enable the coalition to track its impact on media coverage of the issue.
- Focus group discussions on the issue of health data governance to assess public knowledge and understanding of the issue and levels of awareness of the My Data Our Health campaign.
- Polling on the issue
Report: The content of the report is expected to cover the four areas set out below:
1. A brief overview of the regional regulatory landscape:
- A brief overview of regulation and legislation related to health data governance across the three regions with particular emphasis on Kenya, Tanzania and Uganda in East Africa, and Senegal, Cote dÍvoire and Benin in West Africa. Regulation and legislation should be reviewed through the lens of the Health Data Governance Principles.
2. A baseline of public awareness and understandings of health data governance across the different countries
An analysis of public attitudes and understandings of the issue of health data governance and establish a baseline for the mobilization 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.
3. An analysis of the state of the national and regional debate as it relates to health data governance using online and ofﬂine tools and methods to provide:
- A benchmark on the state of the national and regional conversation as it relates to health data governance.
- The main framing of these discussions and the narrative and discourse used to talk about these issues.
- A set of qualitative indicators the campaign can use to trask its impact on the national and regional conversation on the issue of health data governance in East and West Africa.
4. 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.
Content and outline of the report
The report should include recommendations on longer term strategies and learning opportunities for popular mobilisation in the particular regions.
- The report should not exceed 35 pages in length excluding the Appendix:
- It should include a baseline for the campaign
- An assessment of the public discourse as it relates to health data governance that can be used as a baseline, therefore that is in some way quantiﬁable, or if qualitative, that includes speciﬁc qualitative indicators.
- 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 initiatives and opportunities where we could share the progress on the mobilisation campaign and gather feedback and learnings. This should include speciﬁc events, platforms, moments, or stakeholders.
- 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 data and copies of interviews as well as transcripts to be handed over to Transform Health at the end of the project.
Selection will take place by 07 October.
The ﬁrst draft of the report should be completed by Wednesday, 27th November.
Funding available for this landscape analysis is a maximum of US$24,000.
Criteria for selection
Transform Health will select organisations based on the following criteria:
- Experience on similar research projects, including public sampling and polling, public attitudinal surveys and polling, baseline analysis.
- Value for money.
- Methodological rigour.
- Ethical alignment with Transform Health’s core principles of equity and inclusion.
- We will prioritise organisations headquartered in low and middle income countries.
Selected organisations may be invited to conduct future assessments and evaluations of Transform Health work.
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 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 trust – between the people whose data it is and those collecting it, between the authorities and the public, and between the public and institutions collecting and using it for the public good. To build this trust we all need to understand and value our data more.
The underlying assumption of the campaign is that there is little political incentive from politicians to grant this issue time on the legislative agenda and to pass effective legislation and regulation. This is because there is a 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.
As a result this issue remains the preserve of technical experts who are developing very effective guidelines on the technical considerations relating to an institution’s responsibilities regarding collection, storage, use and disposal of data. However no one is considering data from the perspective of an individual’s rights to ownership and use and that individual’s responsibility to the wellbeing of the population. Nor is due consideration given to the rights and responsibilities of institutions to access and use that data for public good purposes. The 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.
A second underlying assumption of this campaign is that if we approach this one jurisdiction at a time and negotiate the tabling and passage of legislation in each country, this campaign will take a lot of time and resources. A country by country approach also risks us falling into a situation of ‘data nationalism’ where each countries has its own standards, making the sharing of data across borders for research or disease surveillance purposes more challenging. The campaign will therefore aim to achieve a global framework, developed by consensus by all countries that are members of the World Health Assembly. This can then be domesticated into national legislation, ensuring a common set of agreed standards across contexts. There is a risk that these standards are developed as technical guidance, rather than in an inclusive and participatory manner that fully and meaningfully engages civil society across different contexts, particularly in low and middle income countries.
As a ﬁrst step My Data Our Health will ensure this civil society voice from low and middle income countries among others is well organised and calling for this global framework, to inform national legislation, and also calling for the full and meaningful engagement of all sectors of society in the elaboration of this global framework. is organised and calling we need a bottom up and top down approach. This will also provide the necessary support for a global health data governance framework to be adopted in national legislation. The next step will be to press for domestication.
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 in support for this global framework, and then to adopt this at regional and national level. We will also engage these institutions to ensure the voices and perspectives of youth, women and marginalised communities are heard and taken into consideration both in the development of the global framework and in the way this is subsequently domesticated into national 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.