Blog post by Simon Odiwuor – Member, Kenya Community Advisory Team (K-CAT)
Trust and Leadership in Digital Health Transformation:
Last month, I participated in a forum organized by the Kenya Legal and Ethical Issues Network on HIV and AIDs (KELIN) to disseminate research findings of the Digital Health and Rights Project (DHRP) in Migori County. The room was filled with participants ranging from young people using mobile applications for health information to county officials led by the county executive committee (CEC) member for Health, all eager to participate.
During the forum, I was reminded of how vital trust, policy, and strong local leadership are to digital transformation in health. The discussions were lively, and sometimes challenging, yet sincere. One youth participant expressed it well: “We want digital health tools that see us, not just count us.” This statement captured the day’s theme — the urgent need for digital health systems that recognize individuals’ real-life experiences, not just their data metrics.
Technology Alone Is Not the Solution
Conversations in Migori made it clear that technology by itself is not the solution. Without clear regulations, effective governance, and equal access, digital health could deepen existing inequalities rather than improve them. While more young people are going online, many still lack safe digital environments or dependable access to accurate sexual and reproductive health rights (SRHR) information. Participants openly discussed issues like data costs, online stigma, and anxiety over surveillance.
Yet, amidst all this, there was shared hope. Representatives from Migori’s health department mentioned ongoing initiatives to digitize facility data, and youth groups pledged to collaborate on outreach programs that connect digital tools with community healthcare. There was a real conviction that with the right approach, digital innovation could make healthcare more responsive and equitable.
Who Owns Our Health Data?
However, that optimism feels fragile. Kenya’s recent data crisis, resulting from the freeze in USAID funding, highlighted how much our systems rely on external infrastructure. The sudden shift back to paper records in hospitals after the Kenya electronic medical record (EMR) system went offline raised important questions about who really owns Kenya’s health data and how we can ensure its sustainability. Who controls this vital information, and who is responsible for maintaining it when global funding shifts?
For counties like Migori, this is not just an abstract issue. It determines whether health professionals can access patient records tomorrow and whether young people can trust the systems knowing their most private information is protected. County governments need reliable digital infrastructure, not platforms that vanish when donor funding runs out.
The insights from Migori also highlight a national trend: many digital health tools we rely on in Kenya are designed and managed from abroad. Does this mean that our most sensitive data, including details about sexuality, HIV status, and health behaviors, is stored on foreign servers? For young people already facing stigma and discrimination, this lack of control only heightens their fears and sense of exclusion.
What Steps Can Governments Take?
At the national level, Kenya should:
- Put into action the Digital Health Strategy and AI Strategy, establishing clear funding and accountability frameworks.
- Enforce the Data Protection Act (2019) to protect sensitive health information.
- Invest in domestic hosting and open-source infrastructure to enhance digital sovereignty.
At the county level, leaders like those in Migori can:
- Support locally managed data systems that counties can independently maintain.
- Integrate digital rights and literacy into health and education programs.
- Establish co-design spaces where young people, communities, and developers collaboratively shape digital health policies.
Participants at the Migori dissemination meeting suggested the creation of a County multi-stakeholder platforms to monitor progress on data protection, digital rights, and inclusion. This kind of community-led leadership is precisely what Kenya’s digital transformation needs: grounded in local voices and driven by them.
A Step Toward Local Ownership
Kenya’s shift from KenyaEMR to TaifaCare, a patient-centred, open-source electronic medical records system, is an encouraging development. Built on the OpenMRS platform and aligned with the Digital Health Authority (DHA) standards, TaifaCare signifies a transition toward local ownership, interoperability, and sustainability. An important question to ask is – was TaifaCare built with the participation of and to address the needs of all, including young people and vulnerable communities? How well is the system understood by both healthcare professional and communities?
The Wider Perspective
As someone who has facilitated regional discussions on digital health and rights, ranging from Kitui to Migori, I’ve observed that real progress relies on partnerships that prioritize people. Digital transformation is more than just a technical project, it is a social agreement grounded in trust, inclusivity, and accountability.
If counties like Migori can harness this momentum — combining innovation with youth engagement, sound policy, and responsible data governance — then Kenya can transform digital health into a pathway toward health justice, not just health access.
Ultimately, digital health that is not locally owned or shaped by the people it serves will never be sustainable.Local ownership isn’t just a slogan — it’s the foundation of digital health justice.
