Strengthening Information Systems for Community Based

HIV Programs

Heidi Reynolds and Florence Nyangara

Global Health Mini University9 October 2009

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

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

Six components of a health information system (HIS) Inputs

1. Resources Processes

2. Indicators

3. Data sources

4. Data management Outputs

5. Information products

6. Dissemination and use

Source: Health Metrics Network

Example of a typical reporting system

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

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

Tensions in community-based information systems Bottom up vs. top down

Parallel vs. national systems

Data use vs. data user

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

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)

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

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

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)

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

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

Sources of CSI Information

Community

Caregivers

Children

Youth

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

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).

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)

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)

PC3 - Aggregate scores by domainDomain 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

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

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

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

Technical consultation outputs

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

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

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

Other recommendations

Global fund work on community systems

World Bank developing 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

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.