Community-Owned Data Infrastructure

IKIS

The Integrated Key Populations Information System is the first community-led and managed data platform for Key Populations in Uganda, built by us and for us.

What is IKIS?

Launched in September 2024, IKIS is a purpose-built platform for rights-based data collection that has rapidly evolved from a pilot initiative into the essential data infrastructure for Key Populations across Uganda. Developed by UKPC in partnership with TASO, UGANET, and HRAPF through the Global Fund, IKIS was created as a response to the exclusion often embedded in traditional data systems.

What began with 25 organisations has now grown into a community of practice of 45 civil society organisations actively using the platform for evidence-driven advocacy, service tracking, and the protection of human rights. Designed on the DHIS2 platform, IKIS is inherently interoperable, allowing seamless integration with existing national and global health information systems.

45
Civil Society Organisations Using IKIS
1,946
Human Rights Violations Documented
4,854
Clients Reconnected to Care in 2025
26
Drop-In Centres Connected Across 39 Districts

Core Objectives

More than just counting people, IKIS was built to make people count. These are the core objectives driving the system forward.

01

Centralisation of Truth

To serve as the reliable, one-stop hub for Key Populations data, replacing fragmented and inconsistent reporting with a unified community voice.

02

Strategic Influence

To provide KP-led organisations with the evidentiary weight needed to shape national HIV-TB programming and resource mobilisation.

03

Human Rights Documentation

To capture the lived realities of stigma and violence, ensuring that justice is tracked as closely as viral loads. IKIS has documented 1,946 human rights violation cases, with 692 individuals receiving personalised follow-up support.

04

Capacity Sovereignty

To turn every community organisation into a data powerhouse, ensuring Key Populations are the primary authors of their own stories.

Proven Impact

In July 2025, UKPC leveraged IKIS to reconnect 4,854 clients who had been lost to follow-up, representing 31% of the 15,647 clients reported lost across 26 Drop-In Centres in 39 cities and districts. Using a peer-led, community-driven initiative supported by UNAIDS, clients received at least one service ranging from HIV treatment and prevention support to essentials such as condoms, PEP, and PrEP refills.

The majority of individuals reached were young people aged 20 to 29, making this the largest age group served. Of those returned to care, 54% were members of Key Population communities. Pill burden and treatment fatigue were the main reasons for loss to follow-up, accounting for 35% of disengaged clients.

31%
Of Lost Clients Reconnected to Care
692
Individuals Received Personalised Follow-Up
2,847
Young People (20-29) Reached
54%
Returned Clients from KP Communities

The IKIS Tools Suite

IKIS comprises a comprehensive set of tools designed for community-level data collection, analysis, and response. Each tool addresses a specific aspect of the Key Populations experience.

Human Rights Violation Tool
Documents and responds to human rights abuses through a built-in Rapid Response Mechanism.
HIV Prevention Services Tracking
Monitors and supports delivery of HIV prevention services among KP and Priority Population clients.
Hot Spot Mapping Tool
Identifies and maps areas with high KP activity to enable targeted interventions.
Community Score Card
Facilitates community-led assessments and feedback on service quality and accessibility.
Hotline Tool
Provides a confidential platform for reporting incidents, seeking support, and linking to services.
Gender-Based Violence Tool
Documents and supports responses to GBV incidents affecting KP members.
Commodity Tracking Tool
Monitors distribution and stock levels of essential health commodities to ensure availability.
Community Paralegal Reporting
Enables community paralegals to efficiently document and report legal and human rights issues.

Architecture and Design

IKIS is built on the DHIS2 platform, an open-source system widely adopted across global health information systems. This strategic architecture ensures community-generated data is not isolated but flows into broader health intelligence ecosystems, expanding influence and accelerating impact.

Mobile and offline data capture on Android and iOS devices
End-to-end encryption with role-based access control
Two-factor authentication and audit trails
Custom form builders with multilingual support
Secure photo and audio uploads with encryption
Real-time dashboards with data visualisation, maps, graphs, and charts
Interoperable with national health management information systems
Browser-based access, easily deployable across regions
"What is not documented is denied. Our data must speak truth to power."

IKIS Guiding Principle

Partners and Sustainability

IKIS was developed through strategic partnerships and is designed for long-term sustainability through integration with national health information systems, capacity building for community organisations, and strategic partnerships with research institutions.

Developed in partnership with TASO, UGANET, and HRAPF
Funded through the Global Fund
Lost-to-follow-up initiative supported by UNAIDS
Integration with Ministry of Health national systems