ToroDev boasts of along time partnership (over 10 years) with SPIDER – The Swedish Program for ICT in Developing regions, a digital and research center at the Department of Computer & System Sciences (DSV), Stockholm University – Sweden. A number of ICT for development projects have been funded by SPIDER and implemented by ToroDev in Uganda and Kenya, since 2012.

Most recently in February 2023, SPIDER approached ToroDev to for renewed partnership to conduct a research on “Health Data Governance” in the East African region countries (Uganda, Tanzania & Kenya). The study findings and recommendations are aimed at supporting the “My Data : Our Health” campaign, spearheaded by Transform Health Coalition, an international digital health advocacy organization headquartered in Barcelona, Spain.

Specific tasks for ToroDev to complete are the following;

• Evaluating policies, laws and regulations on health data governance in the three East African countries and providing perspectives on their adequacy, recommendations for reform/review and appropriate and implementation aimed at promoting inclusive access to better health care.
• Assessment of awareness among the population on health data, its management, security and value in Kenya, Uganda and Tanzania. This includes an analysis of public debate on the topic within the aforementioned countries as well as individual surveys. This will provide a benchmark on campaign progress in the future.
• The main framing of these discussions and the narrative and discourse used to talk about these issues, with a set of qualitative indicators the campaign can use to track its impact on the national and regional conversations on the issue of health governance in East Africa.
• Explore the current health data protection and privacy practices , including data generation, management and utilization systems and the trends in digitalization (use of modern digital technology) in data governance in East Africa (Uganda, Kenya and Tanzania).
• Make policy and practice recommendations on health data governance in East Africa to improve trust and credibility of health data.

The current update is that ToroDev has already completed conducting focus group discussions in the three countries, whose participants included key stakeholders of health data governance drawn from ministries of health, health research institutions (both private and public), academia/universities, CSOs, women and youth groups, and the legal fraternity represented by lawyers of extended experience in litigating health data governance issues. A systematic literature review is also underway to understand the available legal and policy framework that currently supports responsible access and use of health data to promote the well-being of citizens, as well, protection of their privacy in the health sector.

More updates will be added here as they emerge from the study.