Report of a Technical Consultation on Information Systems for Community-Based HIV Programs

This 80-page report explores health information systems (HIS) to track efficiency of community-based HIV programmes, defined here as non-facility-based programmes including those that provide services for children orphaned or made vulnerable by HIV, home-based care (HBC) and support services for people living with HIV, and prevention programmes for the general population such as youth or high-risk populations such as sex workers. It shares the proceedings of, and recommendations that emerged from, a July 21-22 2009 meeting convened in Washington, DC, United States (US) by MEASURE Evaluation, which is funded by the U.S. Agency for International Development (USAID) and is implemented by the Carolina Population Center at the University of North Carolina at Chapel Hill, in partnership with Futures Group International, John Snow, Inc., ICF Macro, Management Sciences for Health, and Tulane University. Attendees included 50 experts representing multinational agencies, international profit and nonprofit organisations, and local implementing partners.

MEASURE's perceived need to strengthen monitoring and evaluation (M&E) systems for community-based HIV programmes is based on the observation that, although there is increasing acknowledgment of the important role of community-based programmes, frontline providers and volunteers delivering community-based services are faced with a significant data collection burden. This is due to the fact that community-based programmes are diverse in terms of their capacity and resources, and they are often multisectoral, such as programmes for orphans and vulnerable children (OVC). The purpose of the technical consultation was to obtain consensus on a way forward to ensure that information systems provide high-quality data that are used to improve programmes and facilitate reporting and use throughout the health system and beyond.

The consultation consisted of presentations and small group work. On the first day, participants presented on a variety of resources and experiences from community-based programmes.

• Several community-based information system tools were presented: Community-level Program Information Reporting (CLPIR) tool kit; Child Status Index (CSI); Orphan and Vulnerable Children Well-being Tool (OWT); draft operational guidelines for the M&E of most-at-risk populations (MARP); Excel to Google Earth (E2G) tool; and Sample Vital Registration with Verbal Autopsy (SAVVY).
• Participants heard from programmes' perspectives in implementing and carrying out community-based information and monitoring systems. Two experiences were represented: Salvation Army (Tanzania)'s Most Vulnerable Children Program; and Fondation pour la Santé Reproductrice et l’Education Familiale (FOSREF) (Haiti)'s prevention programmes and services for adults of reproductive age, youth, and commercial sex workers.
• Four presentations explored experiences with taking the information systems from the programme level and making them consistent across programmes, implementing partners, or donors at the national level. These experiences included: Zimbabwe’s system to monitor the National Action Plan for OVCs; Guyana's national monitoring system for community-based HIV programmes; Haiti's common community-based information system among USAID-supported programmes; and South Africa's home-based care programme information system, supported by Family Health International (FHI).
• Three presentations focused on specific efforts to engage the community and to strengthen the community voice in the monitoring process: Scale up Hope in Mozambique, which built the capacity of the community to deliver and monitor services; World Bank's plans for a 2-year evaluation of the community response to HIV; and USAID's concept for a cross-sector programme support model to bring multisector data into a community hub for community use.
• Experiences of information systems and methods from non-HIV programmes wrapped up the first day's presentations: Census-Based Impact Oriented (CBIO) information systems, which have been implemented in Haiti, Bolivia, and Liberia to track vital events and health service provision; the Care Group system, which has been implemented in Liberia, Mozambique, and Honduras where each Care Group member (a community member) visits 10-15 households on a regular basis to deliver health care messages and to collect information; and M&E tools used by programmes supported by Food for the Hungry.

The second day focused on identifying a vision, challenges, and next steps.

• The group articulated a future vision for the field: "Information systems for community-based HIV programs are based on evidence and have the capacity and resources to effectively collect data on harmonized indicators, report those data to an interoperable reporting system, and use data generated by this system to make programmatic decisions to meet community-defined needs and to communicate with the community beneficiaries."
• The group discussed challenges and next steps along 5 themes: community ownership, MARP, harmonisation, capacity building, and data collection for outcome monitoring. A number of important challenges and gaps were listed by participants, reflecting themes reiterated throughout the meeting:
  • There are varying perceptions and definition of "community" or "community-based".
  • The purpose, audience, and user of the information system are not always articulated.
  • Information gathering requirements pose a burden for frontline providers.
  • Human resource capacity varies widely and often depends on volunteer or low-literate frontline staff.
  • Expectations for community-based staff and volunteers are not defined, nor do we understand their capacity and needs.
  • There are few linkages among different health information systems.
  • National systems are not fully functional.
  • Data quality and use are weak.
• Three main areas for next steps were defined:
  1. Foster a culture of using data at the community-based programme and community level where data are linked with action. Conduct systematic inquiries to understand what communities and community-based programmes want and need to know. Map this information to what is currently being collected. Raise awareness of the purpose and rationale for the data that are being collected. Explore incentives for community-level data use. Adapt data-use tools with a focus on the community and community-based programme level.
  2. Research and develop a framework for information systems for community-based HIV programmes at the international level. The framework would aim to reduce unnecessary data collection while keeping in mind the continuum of data needs from the community to the donor level.
  3. Promote the available resources and experiences related to information systems for community-based HIV programmes, while at the same time working to raise awareness about the remaining challenges, gaps, and priorities. Advocate for this agenda via a wide range of fora.

Recommendations emerging from the meeting underscore the fundamental need to strengthen monitoring and data use at the community-based programme level by implementing M&E systems that are tailored to the skills and capacity of - and meet the data needs of - programmes, and by building systems that yield quality, complete, relevant, and timely data.