Data, DREAMS, and Disease: How to make a health information system useful for HIV prevention?
Our DREAMS Innovation Challenge project with Zambia’s National HIV/AIDS Council overcomes data gaps that hamper HIV prevention.
Tomorrow, a public event sponsored by the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) will showcase five of the most impactful initiatives emerging from the DREAMS Innovation Challenge. One of these projects features AidData’s efforts to enhance a health information system in Zambia, a tool which now serves over 1,000 users from 300+ organizations. One outcome of the project was lessons on how best to increase HIV/AIDS prevention among vulnerable groups—in Zambia or elsewhere.
Watch Empowering Africa's Daughters: Lessons from the DREAMS Innovation Challenge online here.
“[The new tool] is flexible and adaptable,” notes William Sikazwe, a National AIDS Council official involved in the project. “It can be accessed by anyone, anywhere… Thereby making it easier to take stock of the community side prevention interventions and accounting for their relevance.”
Zambia continues to face an HIV/AIDS epidemic. According to UNAIDS, over 1 million people in the country (population 17 million) were living with HIV in 2016. That same year, it's estimated that around 60,000 people contracted HIV, and about 20,000 died from AIDS-related causes.
The country has made progress since 2010—new HIV infections are estimated to have decreased by 27%—but the HIV/AIDS epidemic is still acute among specific, tough-to-reach key populations like adolescent girls and young women. In sub-Saharan Africa as a whole, this group accounted for 74% of new HIV infections in 2015.
Through the DREAMS Innovation Challenge, AidData and local partners teamed up with Zambia's National HIV/AIDS Council (NAC) to tackle a critical need: bridging the gaps in their management information system, called "NACMIS." These data gaps hindered HIV prevention efforts for key populations and vulnerable groups, including adolescent girls and young women. By revamping the online portal, the NAC and its partners across all 10 provinces and 116 districts in Zambia can now input and access timely data on how, where, and which HIV/AIDS prevention-related activities stakeholders have recently conducted.
The need for better data
At the start of the project in 2016, HIV coordinators and implementing partners in Zambia faced considerable challenges with the NACMIS. While the system captured HIV prevention activities at the district level, information was not provided at the level of data disaggregation necessary to feed into key indicators about vulnerable populations relevant to Zambia's 2017-2021 National HIV and AIDS Strategic Framework. Information systems were not integrating data from multiple sources—for example, on both prevention and treatment—and so neither government decision-makers nor implementing partners had a holistic picture of HIV/AIDS activities underway. Partners on the ground also identified challenges in accessing data disaggregated by age, gender, and district in one consolidated system, and district and provincial AIDS coordinators lacked access to dashboards that conveyed clear, actionable insights from the collected data.
Capturing disaggregated data required major changes to the system itself, requiring the team to navigate how to move from paper-based forms to electronic data entry in remote areas with limited connectivity.
Overcoming these challenges and making the NACMIS fit for purpose was essential in Zambia’s fight against HIV and AIDS. “The need for verifiable information for decision making is critical because it reduces waste, duplication and unnecessary competition,” noted Dr. Jabbin Mulwanda, Zambia’s Permanent Secretary in Charge of Health Services at the launch of the new NACMIS in Lusaka, Zambia last November.
After two years of work addressing challenges and implementing solutions, the NAC and its partners in Zambia are now using this upgraded system. In a survey of end users conducted by Zambia's NAC at the end of the project in 2018, 91% of stakeholders indicated that they were able to get all of the information that they needed from the new system.
Data does not live in a vacuum; it is used by specific groups for discrete purposes in many contexts. One fundamental lesson learned from this project is the importance of strong partnerships on the ground. In order to get better, disaggregated data, the NAC, along with AidData and other DREAMS partners, went through an extensive consultative process to refine indicators tracked by the system, balancing the need for more granular data with the need to streamline data entry at district and provincial levels.
Making data more accessible alone is not enough; decision-makers need data that is fit for their particular reporting and planning purposes. In order to make it easier to interpret these newly-refined indicators, five dashboards were created. One dashboard maps and tracks partner activities by location and makes it easier to analyze whether those efforts are reaching vulnerable populations in specific districts that need to be reached. Four other dashboards provide targeted information that facilitate the specific reporting needed to provide senior officials with accurate and timely data on risk, prevention, and treatment metrics.
Finally, in order to institutionalize a culture of data use, training and on-boarding were essential. With 10 provinces and 116 districts in Zambia to reach, the NAC and AidData trained 29 NAC officials to be master trainers for the new NACMIS. The master trainers went on to train 116 district AIDS coordination advisors who then trained implementing partners to use the new online system to report their data.
As we celebrate the close out of this DREAMS project, the NAC is still making updates to make sure that the system stays up to date and continues to guide HIV/AIDS prevention efforts. Following implementation of the project, the NACMIS had 1,160 users, 908 reporting stakeholders and 366 organizations registered in the system. The number of system users will continue to increase as NAC continues to train and register new stakeholders across the country. AidData is taking the lessons learned from this partnership and applying them to other projects.
You watch the recorded livestream of the DREAMS Innovation Challenge closeout event here. For more information about how AidData approaches health data innovation, visit aiddata.org/health-data-innovation.