Digital transformations offer huge potential to overcome health challenges in Africa. Digital infrastructure and digital connectivity vary widely across the continent but levels of internet access and digital literacy are growing rapidly. According to the World Bank, Over 160 million Africans gained broadband internet access between 2019 and 2022.
Harnessing digital innovations to improve young people’s health and well-being and achieve Universal Health Coverage (UHC) in Africa is a high priority for the DTH-Lab. Africa is home to the countries with the highest proportions of young people and stronger governance is required to ensure that increased digital access and the use of data does not exacerbate inequalities or even undermine health outcomes.
The DTH-Lab was therefore pleased to be actively involved in the Africa Digital Health Summit (ADHS) this year, highlighting our work on data governance and the importance of involving youth in the digital transformation of health systems. The ADHS 2024, which took place in Lagos Nigeria, brought key players from the health sector together, and provided a platform for innovators, academics, entrepreneurs, researchers, regulators, policymakers and development partners to share knowledge and experience in digital health across Africa.
The two-day event was attended by several notable figures, including the Minister of State for Health, Dr. Tunji Alausa; the Executive Secretary of the National Identification Authority of Ghana, Prof. Kenneth Agyemang Attafuah; the Commissioner of Health for Lagos, Prof. Akin Abayomi; the Deputy Director of the Federal Ministry of Health, Abuja, Dr. Anthony Adoghe; the Head of the Digital Health Unit at the Lagos State Ministry of Health, Dr. Banke Odunsi; and the PharmAccess Country Director, Mrs. Njide Ndili, among others.
An event highlight included our Founding Member, Njide Ndili, and Project Coordinator, Tomiwa Akinsanya, engaging with the State Minister for Health Dr. Tunji Alausa, discussing our work as ongoing efforts to enhance the digital transformations for health within Nigeria’s healthcare systems.
Youth workshop on co-designing digital first health systems
In partnership with PharmAccess and the support of the International Federation of Medical Student Associations (IFMSA), we hosted a youth workshop at the ADHS on co-designing digital first health systems. Thirty five young people from diverse backgrounds participated in the event and shared their views on what an ideal health system will look like in the future and the role that digital technologies and data will play in those systems.
The DTH-Lab’s Project Coordinator Tomiwa Akinsanya provided welcoming remarks and highlighted that the doctor patient ratio in Nigeria is about 1:10,000, presenting a significant burden and challenge on the healthcare system. She therefore recommended “that digital first health systems are prioritized to cushion the effect of this burden on healthcare workers and advance the digital transformations for health systems.”
Njide Ndili, rendered the opening address and emphasized the importance of creating inclusive health systems, highlighting that young people’s voices and perspectives are crucial in designing and governing digital first health systems (DFHS) of the future. “Young people are the highest adopters of mobile and digital technologies; hence, their health priorities need to be captured in the design of digital health technologies” she stated. The workshop was then followed by a mix of sessions (e.g. plenaries, thought exercises, breakout groups, videos and polls) which encouraged active participation and interaction by the participants. The workshop was moderated by Lydia Jummai Gara, Regional Youth Champion for DTH-Lab, with facilitation provided by DTH-Lab’s Youth Officer, Enow George Stevens, alongside IFMSA representatives Deborah Ojo, Damilola Iluyomade and Olusola Aremu.
The findings from the workshop will feed into the DTH-Lab’s work to co-design a blueprint for digital first health systems with young people. Read more about this project here.
Panel discussion on health data governance
Policymakers and other stakeholders have recognized the need for more robust and better coordinated governance of health data in order to maximize the benefits of health data, build trust and protect privacy. In collaboration with Transform Health, the DTH-Lab convened a multi-sectoral panel of experts to discuss current initiatives to strengthen health data governance including the Africa CDC’s Flagship Initiative on Health Data Governance and a new draft model law, which sets out core elements and guidance to build consensus across countries and serve as resource for strengthening national approaches. This extensively consulted draft Model Law is a starting point for discussion amongst governments. Government leadership is critical to take it forward for endorsement through a World Health Assembly resolution and regional mechanisms, and ultimately to implement it to strengthen national frameworks.
Panellists debated the fundamental values and principles that must underpin all national, regional and global approaches to health data governance. In particular, we highlighted how a solidarity-based approach to data governance can be implemented in different contexts to protect individual rights while also maximising the public value of data use.
Key Takeaways
Digital technologies have a transformative potential in achieving UHC and young people who are the highest adopters of mobile and digital technologies have great potential to serve as enablers to advancing UHC and achieving health for all. Speaking on what needs to be done to ensure that young people fully benefit from health data, Tomiwa Akinsanya, DTH-Lab Project Coordinator stated that “Young people stand to benefit enormously from health data use, in that not only can it lead to better treatment options and early diagnosis of medical issues in youth, but understanding the power of health data can inspire young people to enter medical and research fields.” She underscored that young people are interested in knowing what their health data is used for and highlighted the DTH-Lab’s approach to advocating for a solidarity-based data governance approach using the public value assessment tool, PLUTO which was developed in partnership with the University of Vienna.
“The DTH Lab advocates for a data solidarity (or solidarity-based) framework to data governance. In a nutshell, this seeks to maximize the benefits of data use while reducing the risks, and to ensure that the risks and benefits are borne equally. In other words, data solidarity seeks to facilitate health data use with high public value. In the case of young people, this would mean promoting health data use that benefits young people (e.g. through treatment, and education), and disincentivizing more harmful data uses by large entities with little public value (e.g. social media algorithms designed to addict young people – thereby affecting their mental health). Governments and health ministries have limited resources. In practice, PLUTO (or an adapted version of it) could be used by these entities to help make decisions on which data uses to support”. – Tomiwa Akinsanya
Dr Anthony Adoghe, Deputy Director of ICT at the Nigerian Federal Ministry of Health highlighted some of the already developed frameworks and strategic health plans currently under implementation in Nigeria, these include the; 2023 Nigeria Data Protection Act and the National Strategic Health Development Plan. He mentioned that the development of these frameworks underscores Nigeria’s commitment to advancing a value-based driven governance approach for health data use, however there is a need to harmonize the laws, policies and frameworks to ensure it is domesticated and implemented nationally. He also emphasized the need for sustainable innovation stating that “The government and INGOs should prioritize infrastructure, funding, regulatory frameworks, skills development and collaboration among stakeholders by ensuring a comprehensive, multi-pronged approach in the deployment of digital health technologies and generation of health data as it is crucial to fostering impactful and sustainable innovation. »
Nnenna Nwakama, shared the efforts of Transform Health in supporting the development of the Model Law on Health Data Governance. She emphasized that the “Model Law can act as a resource for governments to strengthen regional and national approaches towards Health Data Governance and to also harness the potential of data for public benefit and improved health outcomes.” The Model Law articulates core elements, legislative guidance and reference legal text for strengthening national regulation and legislation. Learn more about the draft Model Law here.
Nkiruka Ukoh, Technical Expert from WHO Nigeria, described the efforts of WHO to advocate for health data policy frameworks and close the digital divide gaps in the domain of health data generation, use and distribution she stated that the WHO has been working in the past few years to support the development and implementation of health data policy frameworks including the National health Information System Policy 2021, the National Digital Health Policy 2021, and the National Digital Health Strategy 2021 to 2025. She emphasized the WHO’s efforts in bolstering the capacity of the healthcare workforce and policymakers in marginalised regions through capacity building initiatives aimed at strengthening the understanding and implementation of health data laws among healthcare professionals, policymakers, and data custodians. Workshops, training sessions, and technical assistance are provided to enhance these stakeholders knowledge and skills.
Carlos Yerena, Director of Partnerships and Growth Reach Digital Health, echoed the importance of digital, health and civic literacy for all stakeholders in shaping ethical health data governance and highlighted that equitable health benefits can only be gained from digital transformations when all people critically engage with digital ecosystems and actively participate in their governance. Yerena, also commented on the current bane of many duplicated digital health technologies.
“In our current dispensation, providing strategic support and harnessing the learnings of failed digital health technologies for scalability and innovation is more effective compared to duplicating or replicating numerous digital health models or products”. – Carlos Yerena
It was intriguing to observe that not only did this panel on health data governance present valuable insights into the current legal frameworks on health data, but it also sparked the awareness of all the attendees on the importance of how their health data can be exposed to potential risks. However, a realization of advancing a solidarity-based approach to data governance can help them increase the public value of data use and reduce the risks, in other words, maximize the benefits of data use while reducing the risks, and ensure that the risks and benefits are borne equally.
Conclusions
As we anticipate upcoming regional events like ADHS 2025 and global convenings such as the Summit of the Future in September, aimed at advancing digital health transformations, we are optimistic that the pivotal dialogues and initiatives (i.e., The Model Law & PLUTO) to enhance health data governance and adopt a value-based approach can be customized and standardized across Africa.
Below are three proposed key recommendations to inform the next steps to advancing coordinated governance of health data in order to maximize the benefits of health data, build trust, protect privacy and promote the public value of health data use:
Learn more and get involved
Tomiwa Akinsanya, Project Coordinator at the Digital Transformations for Health Lab, is passionate about using digital technologies and innovative behavioral sciences to enhance global youth health. Tomiwa has worked with respected organizations dedicated to advancing digital health and youth well-being globally. With almost a decade of experience, a B.Sc in Physiology and a Masters in Public Health, she applies specialized skills in research, project management, communication, stakeholder management, and advocacy to improve health systems for the benefit of all. Her core values are aligned with Innovation, Empathy, Creativity, Integirty, Team Work and Excellence.
