Both people who live with HIV and those who are at high risk for contracting HIV over their lifetime require services and treatment over extensive periods of time. This long-term treatment is only possible with a coordinated, holistic, and sustained approach. Data is key to epidemic control and is required across the continuum of care—first to identify clients at risk of HIV, then to link them to the proper services and treatments, and finally to keep them in care throughout their lifetime.
Data.FI is a global project that helps countries strengthen and sustain access to key, high quality data with which to make informed decisions to accelerate and maintain HIV and COVID-19 epidemic control. The project supports four services areas: digital health systems strengthening, data analytics, decision support interventions, and data standards and governance.
IMC US is leading and supporting the identification and implementation of responsible data approaches into the Data.FI activity. This includes data protection, privacy, and security, data transparency and openness, data privacy regulations, and data system usage and sustainability. IMC also provides technical guidance on data ethics, digital inclusion, and “do no harm” principles when using data.
OUR GOALS AND RESULTS
Results to date include:
- Developed a data management framework and a responsible data toolkit that advised consortium members on managing data throughout the program lifecycle, and is defining and monitoring compliance over the course of the program and drafting and reviewing data sharing agreements amongst the consortium.
- Conducted benefits and risks assessments in Burundi and Uganda to assess the opportunities and areas of concern for using biometrics for identification of sensitive populations.
- Designed and implemented a “privacy by design” unique identification system in Uganda, which has been adopted by all four regions of the country. The system is currently being scaled up to all USAID-supported health facilities in the country.
- Provided a Ugandan data privacy assessment for key population organizations.
- Provided input as part of a technical advisory committee in Burundi responsible for creating Standard Operating Procedures to guide facilities in using an electronic medical records and biometric identification system. IMC also works with the team to provide final approval of all system specifications and documentation.