Better Information for Better Health and Opportunities for ICT-enhanced Solutions Mark Landry

1. Better Information for Better Health and Opportunities for ICT-enhanced Solutions Mark Landry Office of the U.S. Global AIDS Coordinator February 2, 2009

2. Overview • Next 5 years of PEPFAR: emergency plan to a sustainability plan • Health management information systems (HMIS): better information for better health • ICT-enhanced solutions: what’s a good fit and how will you know it when you see it? Goal this week: Help identify community-specific potential opportunities and plan to leverage relationships and resources to take action.

3. Beyond 2008: 10-Year Program Goals Working in partnership with host nations, PEPFAR will support: • Treatment for at least 3 million people • Prevention of 12 million new infections • Care for 12 million people, including 5 million orphans and vulnerable children • To meet these goals, PEPFAR will support training of at least 140,000 new health care workers in HIV/AIDS prevention, treatment and care.

4. PEPFAR Worldwide Activities

5. HMIS Technical Working Group • Mission is two-tiered, focused on both: • Information systems needed to implement HIV services under PEPFAR (collect, store, transmit, analyze, and disseminate data) • Information systems needed for monitoring and evaluation, to ensure accountability Effective HMIS interventions influence the success of PEPFAR.

6. HMIS TWG Goals • Developing written five-year strategic plans for health information systems • Assessment/evaluation of implemented systems    • Improved data quality • Increase data use • Improved human capacity around HIS planning, design, and implementation • Increased integration of separate information systems

7. HMIS TWG Goals (continued) • Automatic generation of indicators • Increased timelines and completeness of data • Improved sharing of technical expertise (e.g., South-to-South technical assistance) • Use of IT to increase quality of service delivery • Fully functional implementations of systems for clinics, labs, community interventions, program reporting, etc.  • Assisting other TWGs in articulating their information systems strategies

8. Component HMIS Sub-Systems • Program/project management systems (indicators) • Clinical, patient-level information systems (electronic medical records) • Community-based services information systems • Palliative care (e.g., HIV/TB) • Prevention activities and indicators • Orphans and vulnerable children programs • Blood safety tracking systems • Laboratory information systems • Geographic information systems GIS) • Supply chain/logistics management information systems • Comprehensive training management

9. Origin of Primary Data DATA SOURCE Many Registries of the Primary Health Worker

11. Burden of Data Aggregation Weekly Data, manually computed by the data entry operator

12. Data Storage and Retrieval

19. RWANDA’S TRACnet / Phones for Health Cell Phone Phone PCs/ Internet 4 3 2 1 Local Applications PDA/ Smartphone Modified after: Eddie Karisa, CDC-Rwanda, 2007

20. Strategic use of ICTs in the next generation of PEPFAR • HMIS capacity building • Cohesive strategy • National, regional, community ownership • Coordination, targeting, and follow up • Reaching the hard to reach • Target populations (e.g., most at-risk, remote, underserved, priority, OVCs) • Emphasis areas (e.g., prevention) • Continuity of care • Leveraging resources and existing infrastructure

21. Some PEPFAR Challenges • Prevention case studies • Behavior Change Communication (BCC) • Prevention of Mother to Child Transmission (PMTCT) • Care case studies • Orphans & Vulnerable Children (OVC) • Continuity of Care: tracking individuals and their personal medical records • Community-Based Systems • Data Management and Use – “Data for Decision-making” • Treatment case studies • Patient services: ARV adherence and monitoring • Health Worker training and referral/consultation services

22. Prevention Case Study: BCC now

23. ICT-enhanced BCC in the future • HIV Free Generation www.hivfreegeneration.warnerbros.com • Gaming: PC and cell phone • New technology: Microsoft MultiPoint

24. Care Case Study: Continuity of Care

25. Care Case Study: OVC

26. OVCs In-Depth: Who are these children? • Children who parents have died due to AIDS • Now living with grandparents, extended family, community members, in orphanages, on the street. • May be treated as second class children, e.g. less to eat • Children who have a parent who is sick and can no longer care for them • They drop out of school to care for parent, to work, beg • Children who are stigmatized and grieving • By 2010, orphaned by AIDS globally is projected to exceed 20 million, with 80% in sub-Saharan Africa • The number of other children made vulnerable because of HIV/AIDS is estimated by some to be more than double that number.

27. What these children need • Food & Nutrition • Nutritional assessment and counseling • Nutritional supplementation • Staples for food insecure HH • Therapeutic feeding for malnourished children • Linkages and referrals to health and nutrition interventions • Shelter & Care • Identify short-term, protective shelter for children living outside of family care. • Monitor and provide for material needs, i.e. clothing • Protection • Facilitate birth registrations/ inheritance/succession planning; guardianship and adoption • Support transfer of abused children to temporary safe houses or permanent placements • Report and litigate abuse cases • Psychosocial • Provide recreational, cultural, and spiritual activities that support life skills and self-esteem • Individual or group counseling • Develop memory books • Health • HIV and AIDS prevention messages • Age appropriate health education • Immunizations • HIV screening • Referral and follow-up for treatment services including HIV • Education /Skill • Subsidizing school related costs • Provide bursaries to support vocational training • Support after-school programs that assist with homework • Link older youth to resources for setting up small businesses or employment opportunities • Economic Strengthening • Participation in economic strengthening activities

28. Strategies for Caring for the OVC • Strengthen families to protect and care for OVC • Facilitate access to or provide basic social and protective services • Build capacities of communities, local gov’t, provincial/district gov’t, national gov’t, to support families and care for orphans and vulnerable children. • Advance policy and legal reforms in order to enable supportive environments for children’s growth and development.

29. OVC Programming Challenges • Comprehensive programming • Multisectoral • Lack of referral systems • Weak social service systems • Varying strategies for Identifying children in need • Generalized, high prevalence – Use of community committees • Concentrated epidemics – Identify through affected families, e.g. treatment, C&T, PMTCT, and PLWHA.

30. Treatment Case Study: ART • Challenge: ARV adherence and loss to follow up • ICT-enhanced solution: SMS services • Adherence Reminders • Patient Monitoring / Adverse Events • Patient Tracking • SMS Info Feeds • FAQs • SMS Question Box • SMS Support Clubs • SMS Solutions • Phones for Health • MDNet • Frontline SMS • Mobile for Life

31. Treatment Case Study: Health Worker Training Training centers in urban areas What about hard to reach areas? OLPHW: One Laptop per Health Worker

32. Emerging Telecenter Ecosystem • A telecenter is a public place where people can access computers, the Internet, and other digital technologies that enable people to gather information, create, learn, and communicate with others while they develop essential 21st-century digital skills. • Where are telecenters in your area? Sponsors ready to multi-purpose them with HIV/AIDS content. • Cisco Network Academies • Microsoft Community Resource Centers • Intel World Ahead Learning Centers • Inveneo/Intel mobile clinics/IT labs

33. Public-Private Partnerships: Microsoft • Behavior change communication to impact youth through HIV/AIDS awareness campaigns using multimedia • HIV/AIDS curriculum development/gaming at school • Home PCs “pay as you go” with FlexGo technology • Expanding role of Microsoft-funded community centres • Enabling kiosks with HIV/AIDS messaging • Earning credits for cell phone usage • ICT support for country information systems • Co-sponsorship of meetings or symposiums • Knowledge management - delivering individual journals over analog dial-up connection • Research and Development with Microsoft health experts