Collection supporting HIV data gathering provides support for front lines

By Jackie Hellen, MPH. With community workers and program managers in mind, MEASURE Evaluation worked to develop an online collection of Community-Based Indicators for HIV Programs.

By Jackie Hellen, MPH, MEASURE Evaluation

Community workers and program managers work tirelessly to control HIV at the local level in low-resource settings. I think what they do is heroic. So, it’s been gratifying to work on a new tool that I am certain will make their jobs easier, make it possible for them to see results of their work more clearly, and—I expect—provide the motivation to keep fighting.

With these community workers and program managers in mind, MEASURE Evaluation worked to develop an online collection of Community-Based Indicators for HIV Programs. Community workers must often collect large quantities of data to satisfy requirements from multiple external donors who are making these important HIV programs possible, but whose information needs are not aligned.

The collection of indicators was developed for governmental and nongovernmental project implementers and international development professionals who need help to understand the answers to a few fundamental questions:

  • How are global HIV programs that support key populations, vulnerable children, pregnant women, and families typically collecting data at the community level to inform decision making?
  • What information should these programs be collecting to curb the epidemic at the community level?

These professionals may need to figure out where to find possible data sources and levels of data disaggregation, or how to ensure data quality, or how often they should report data. We sought to answer these questions with this indicator collection. As we worked, we saw concrete examples of programs making evidence-based decisions using community HIV data that could be attributed to improved outcomes for people living with HIV. We saw it as an important opportunity to feature their work when this kind of data use seems to be rare. It’s also rewarding to offer a guide that helps community workers and health program managers discover they can get better information and use data to help communities with a high HIV burden — not only to show results to their donors.

To build the collection, we reached out to governmental and nongovernmental HIV programs around the world and gathered their data collection tools used at the community level. Among the tools, we examined registers, home visit and household data collection sheets, referral forms, and checklists, and recorded all data elements they contained. We then chose the most commonly collected data elements and consulted those who had shared resources with us to establish a final list. The vetted data elements were transformed into indicators. We conducted research and consulted project experts to inform definitions and reference details for each indicator. We also featured data use cases developed from in-depth interviews with professionals of implementing partners in developing countries around the world who work on community-based HIV programs.

The Community-Based Indicators for HIV Programs collection is intended to make an impact in these ways: The indicators are precisely defined and we provide direction on how to calculate and report them. The collection allows program staff to measure if their beneficiaries are being counseled and tested for HIV, if they are receiving needed services, and if they are adhering to treatment. Use of the indicators also serves to help countries harmonize and align their community-based HIV indicators so that data collected can truly inform multisectoral information needs and resource allocation. This collection could also be useful if community-based organizations decide to improve and integrate their information systems, especially when they are collecting a lot or very little data in different ways (paper or mobile), have differing levels of data quality, and may be working towards different aims—such as behavior change, condom use, patient tracing, or counseling and testing.

Countries and programs, and the professionals on the front lines, can use this collection to standardize their information-generation processes and ensure that they collect only essential information to inform community-based HIV programming. We wanted to push towards improved community-based information systems for HIV programs in high-burden contexts, because information is power and informed professionals have the power to curb the epidemic at the local level.

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Republished with permission from Science Speaks.

Jackie Hellen, MPH, is senior monitoring and evaluation associate with MEASURE Evaluation, Palladium. MEASURE Evaluation is a five-year projected funded by USAID and the U.S. President’s Emergency Fund for AIDS Relief to strengthen capacity in developing countries to gather, interpret, and use data to improve health.

Filed under: HIV care , Indicators , Community , HIV , Community-based health information systems , Community-based
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