This document discusses strengthening information systems for community-based HIV programs. It describes the components and challenges of community-based HIV information systems. It also summarizes a technical consultation on information systems that presented tools and experiences, and proposed recommendations to fill gaps in community-based HIV information systems. The goal is to provide high quality data that improves programs and facilitates reporting throughout health systems.

1. Strengthening Information Systems for Community Based HIV Programs Heidi Reynolds and Florence Nyangara Global Health Mini University 9 October 2009

2. Community-based HIV programs Non-facility based Include services for: Orphans and vulnerable children (OVCs) Home based care and support services for people living with HIV (HBC or C&S) Prevention programs for the general population such as youth or high risk populations such as sex workers

3. Information systems Facilitate Monitoring Process of collecting and analyzing information to track efficiency Evaluation Process of collecting and analyzing information to track effectiveness Reporting Systematic, timely, and periodic information provision of information Source: Building Monitoring Evaluation and Reporting Systems for HIV/AIDS Programs. Pact. 2005

4. Six components of a health information system (HIS) Inputs Resources Processes Indicators Data sources Data management Outputs Information products Dissemination and use Source: Health Metrics Network

5. Example of a typical reporting system

6. State of HIV HIS under PEPFAR Strengthened health facility systems and capacity Facilitate reporting to managers, implementing partners, and donors Parallel systems (lack of integration or interoperability) Concerns with data quality, double counting, and capacity and systems for analysis and use

7. Challenges to community-based information systems Diverse capacity and resources of implementing organizations Integration/interoperability with other Ministries (e.g., health and social affairs) Lack of Ministry mandate to coordinate HIV community-based information systems Lack of harmonized indicators Burden on front line providers and volunteers

8. Tensions in community-based information systems Bottom up vs. top down Parallel vs. national systems Data use vs. data user

9. Technical consultation on information systems for community-based HIV programs July, 2009 Objectives Present tools, resources and experiences Propose way forward to fill gaps Vision Information systems for community-based HIV programs provide high quality data that are used to improve programs and facilitate reporting and use throughout the health system Information and report available through www.cpc.unc.edu/measure

10. Tools and Methods Community-level Program Information Reporting (CLPIR) Toolkit OVC monitoring wellbeing tool (OWT) Guidelines for monitoring and evaluating HIV programs for most-at-risk populations (MARPs) (forthcoming) Excel to Google Earth (E2G) Tool Sample Vital Registration with Verbal Autopsy (SAVVY)

11. Tools and methods con’t Non-HIV specific: Care Group method Barrier analysis Reaching Every District (RED) Care group in MZ ,from “Community Case Management Essentials “ document

12. Example of Community-focused Tool “text box”: Child Status Index (CSI)

13. What is the Child Status Index (CSI)? A community-based tool to assess and monitor child outcomes of OVC Developed in 2006 by MEASURE Evaluation through a participatory community approach in Kenya and Tanzania It has 12 domains that are broad enough to reflect and capture most critical dimensions of child well-being status. Field-tested in Kenya and Tanzania (inter-rater reliability and validity)

14. Rationale for developing the CSI tool To assess and monitor child outcomes To capture holistically the multiple dimensions of child well-being To generate frequent and timely information for program decisions To harmonize the data collection process across OVC program partners To incorporate local perspectives of child well-being

15. CSI Content & Rating Scale Twelve outcome areas Food and Nutrition - (Food Security; Nutrition & Growth) Shelter and Care - (Shelter and Care) Protection - (Abuse & Exploitation; Legal Protection) Health - (Wellness; Health Care Services) Psychosocial - (Emotional Health; Social Behavior), Education and Training - (Performance; Education/Work) Rating 4= No problem; 3=A little problem; 2= Bad problem; 1=Emergency situation

16. Sources of CSI Information Community Caregivers Children Youth

17. Decision-making levels and the use of the CSI? Individual child level – The CSI data enables service providers to make several decisions about each child so as to serve them better. Program Level Assessments - it can also be used at program level through a carefully designed assessment process. So as… To provide information for program improvement To document program effectiveness - achieving the intended outcomes To align program practices with program quality standards, e.g., Ethiopia Case study

18. Analyzing and using CSI data Integrate the CSI tool within the overall M&E for OVC database system For Example: CCF has developed database for keeping, updating, analyzing and reporting information on OVC. The database is linked with other program data and generates automatic reports (see next slide).

20. About CCF Database System The database is secured by a password Both baseline information (during OVC Enrollment) and information gathered during follow-up/home visits is entered to database; In Kenya, a baseline data for 8,853 OVC have been entered so far through New OVC Enrollment (from October 2007)

21. Reducing data collection burden – if CSI used---- As part of a home visit conducted by volunteers & frontline staff (monthly in some areas) Periodically as determined by program or service providers and purposes (e.g. 6 months – see PC3/Ethiopia example)

22. PC3 - Aggregate scores by domain Domain Good (4) Fair (3) Bad (2) V/bad (1) Total n Food and Nutrition 25.8% 40.4% 27.1% 6.6% 9918 Shelter and Care 29.2% 39.3% 22.4% 9.1% 9918 Protection 46.2% 33.3% 15.6% 3.8% 9918 Health 41.3% 33.1% 10.4% 7.2% 9918 Psychosocial Care 38.8% 40.1% 16.9% 4.1% 9918 Education and work 37.0% 35.7% 20.4% 6.3% 9858

23. CSI users’ responses from field Provides a consistent way to assess outcomes Puts focus on outcomes rather than on outputs Helps ensure appropriate responses to child needs Provides data for program managers and improvements Supports advocacy Raises awareness about all areas of a child wellbeing that need monitoring Accountability - demonstrate program progress

24. CSI looking forward Provide guidelines for CSI use at program & national levels (systems) Web-based access for CSI documents Surveillance tool to identify OVC in population and help define vulnerability beyond orphans in-country. Integrate it within the existing data management systems (in program, country, Organization) Mapping of the information

25. CSI conclusions CSI tool is one of the methods/M&E activities to collect data that can inform on the effects of an OVC program CSI assessment - has to be planned and coordinated with other M&E activities (for better scheduling, staffing, funding, and use of existing resources) Consolidating CSI data with other M&E data strengthens the case and advocacy efforts for OVC

26. Technical consultation outputs

27. Vision for the field Harmonize indicators at the global level Generate evidence base Make tools, guides, and indicators available but adaptable Harmonize systems at country level Strengthening information linkages throughout the system Communities determine their needs Strengthen community-based HIV program capacity

28. Challenges “ Community” lacks definition The purpose is not always articulated Information gathering requirements pose a burden for front line providers Volunteer expectations are not defined Linkages are weak Data use is weak Data quality is weak National systems are weak Double counting is a problem

29. Recommendations Foster data use at the community-based program and community level Develop a bibliography of resources Develop a framework for information systems for community-based HIV programs Promote available resources and experiences related to information systems for community-based HIV programs

30. Other recommendations Link in with Global Fund work on community systems Link in with World Bank plan to evaluate community response to HIV Document or evaluate existing experiences Apply lessons learned from non-HIV experiences Seek creative solutions to shift burden from front line, e.g., Review population based surveys

31. MEASURE Evaluation is funded by the U.S. Agency for International Development and is implemented by the Carolina Population Center at the University of North Carolina at Chapel Hill in partnership with Futures Group International, ICF Macro, John Snow, Inc., Management Sciences for Health, and Tulane University. The views expressed in this presentation do not necessarily reflect the views of USAID or the United States Government.