1. Strategic Information for Anti-RetroViral Treatment Programmes Workshop WHO and UNAIDS Geneva June 30- July 2 2003

2. OBJECTIVES OF THE MEETING Assess the needs for strategic information in the context of ART programmes Share experiences in developing monitoring and evaluation systems and other strategic information efforts Explore methods and techniques that can be considered for monitoring ART programmes

3. 2 days and 30 presentations later

4. What we learned Lack of good data on human resources Work with functional classification of health workers Scale Up of Existing programmes with holistic approach Treatment Acceleration Programmes (TAP) ARV drug resistance containment as a programme goal Surveillance needed if drugs available 3-5 yrs to at least 1% of HIV infected persons A M&E guide for M&E of care and support programmes is in the final stages of development TB Control programmes and Stop TB have a comprehensive framework for the generation and use of strategic information Logistics Management Information Systems, parallel and short term success, integrated and long term savings, and need to be agile 7 different AIDS case definitions and the need for a definition that is congruent for surveillance and clinical purposes; Proposal to move to more active AIDS sentinel surveillance in facilities with and without ARV QoL - visual analogue scale, time trade off and standard gamble

5. What we learned Brazil started slowly but now has 125,000 people on treatment in 900 SDPs - 140 per SDP Thailand aims for 900 SDPs for ARVs and 50,000 patients by the end of 2004 Simply M&E tools that generate policy relevant data and no ‘one size fits all’ In Senegal research initially drove the programme, now need for simplification, M&E plan, but M&E capacity problem Economics of ART programmes: more monitoring and research than for any other health intervention Districts are the core of the health system: One district with less than half a million people in Malawi has 7,500 people in need of treatment - simple tools, community survey, clinic / programme M&E iNGO in coastal Kenya aims to have 300 patients on treatment over 5 years, developing 8 patient clinic monitoring forms, research and programme development Haiti DOT HAART delivery through accompagnateurs basis for different M&E system with quarterly updates Kenya has a national plan, expands rapidly including NGOand private sector, considers smart card, bar codes

6. What we learned Good monitoring systems can provide excellent data on survival, retention and adherence; costs could be integrated as well - but … 1 nurse per 100 ART eligible persons... Technology: paper predominantly used, phones for drugs logistics, bar coding for drug cartons, fingerprints, smart cards and point of sale devices, multitude of software developed (each programme own software), real time management, web based data from ART programmes linked to drug supply, luddites Urgent need for involving the community and clients - through surveys, through participatory research, through qualitative research and as part of programme monitoring M&E as a by-product of the work flow of information exchange Gathering information on the prevention care interaction is complex and only limited data can be gathered as part of routine M&E activities

7. OBJECTIVES OF THE MEETING Assess the needs for strategic information in the context of ART programmes Share experiences in developing monitoring and evaluation systems and other strategic information efforts Explore methods and techniques that can be considered for monitoring ART programmes Develop a list of priority strategic information issues faced by national programmes and large-scale projects and explore ways to address those issues

8. STRATEGIC INFORMATION NEEDS What strategic information do we need to deliver ART programmes efficiently and effectively? What will ART programmes be evaluated on?

9. WHAT KIND OF INFORMATION DO WE NEED? Needs, resources, access, coverage What are and will be the needs for treatment? What resources are available and what will be needed? How many have access? Who has access? Programme Monitoring & Evaluation Is the programme performing according to plans? Is the programme able to contain drug resistance development? Does the programme make a difference? Is it achieving its goals? How much does it cost and how cost effective is it? Patient monitoring Operations Research How can programme implementation be improved? What are the best models of implementation? What can be done to improve health systems? Research Can we provide more efficacious and more effective interventions? What impact do programmes have?

10. OPERATIONALIZATION OF INFORMATION NEEDS Needs, resources, access Computer modelling and surveillance data Resource tracking in special studies Routine programme Monitoring & Evaluation Basis is Patient monitoring system which will provide data on N of people on treatment, treatment outcomes Drug supply monitoring system AIDS surveillance Operations Research Special studies carried out with local institutions to supplement M&E data and feed into the programmes Research Long term partnerships between research institutions Supplementary programme Monitoring & Evaluation Health facility survey or district survey Community and individual preparedness assessment Household survey on prevention-care and programme

11. TREATMENT NEEDS AND RESOURCES Strategic Information Field Assessment tools……………..Country needs Estimates of people in need of treatment by residence and sex Based on projected deaths from HIV prevalence using EPP and Spectrum Human resources: workforce size and distribution Data availability on current staffing, training, future staffing needs, health system capacity, impact HIV Economics Prospective and retrospective assessment of costs and estimates of cost-effectiveness; national health accounts; resource flow tracking

12. Input Process Output Outcome Impact DATA COLLECTION for Monitoring and Evaluation HIV/STI surveillance, surveys Patient monitoring Household Surveys Facility surveys Patient monitoring Programme Monitoring

13. PROGRAMME MONITORING (SERVICE DELIVERY POINT LEVEL) Strategic Information Field Assessment tools ……………... Country needs Clinic monitoring Protocol that specifies the kind of data that need to be collected, forms and technologies to be used, communication/reporting etc. Outline the system Link patient data, drug supply, fees Methods / technology to be used Contents definitions - indicators - kind of outcomes Priorities Steps needed Operations Research

14. PROGRAMME MONITORING Strategic Information Field Assessment tools ……………... Country needs Programme M&E Plan that outlines framework, key process, output, outcome, impact indicators and how data will be collected Logistics Assessment of feasibility different systems Develop LMIS; Use of technology (mobile phone, software, bar codes etc.) ARV drug resistance surveillance Surveillance among newly infected persons (e.g. VCT) every 2-3 years Care and support programmes Health facility survey and indicators to assess the quality of treatment of OI and palliative care Care and support programmes Community or household survey / Routine data from NGOs etc. to assess coverage of home based care and support Priorities Steps needed Operations Research needs

15. PROGRAMME MONITORING Strategic Information Field Assessment tools ……………... Country needs Human resources Assessment of current staffing, staffing needs, provider survey, district level Private sector Assessment of feasibility of including private sector in M&E system Community preparedness Survey, qualitative research, with communities and PLWHA Priorities Steps needed Operations Research needs Risk behaviour trends Surveys, qualitative research, develop strategy to assess changes and maximize positive prevention effects HIV testing & counselling Laboratory capacity assessment Patient monitoring Service assessment (access and quality), community readiness, stigma, disclosure, obstacles

16. PROGRAMME MONITORING (OUTCOME ASSESSMENT) Strategic Information Field Assessment tools Country needs AIDS surveillance WHO clinical case definition Reporting forms by main health facilities Quality of life WHOQoL, MOS-HIV, MQoL-HIV Hospitalization Hospital statistics with HIV status (% HIV+ in medical ward, duration admission) Costs Cost monitoring at facility and at central levels Mortality / survival Individual patient monitoring, through paper records smart cards, etc. / special studies Health, morbidity, etc. Monitoring of body weight, being ambulatory, engaged in work or employment etc. Priorities Immunology CD4+ cell counts, viral loads

17. Operations research issues: examples  Integrated systems to track patients, drugs and fees at point of delivery  Appropriate human resource planning for ARV programmes  Working with the private sector – the franchising approach  Setting and supervising/regulating health standards in ART programmes  Equity of access to ART programmes  Measurement of costs of implementing ART programmes  Assessment of community preparedness and readiness  Measurement of stigma and discrimination in the context of ART programmes  Strategies to maximize long-term adherence (chronic disease model)  Delivering and sustaining ART in drug-using communities

18. Research  CLINICAL  When to start treatment  What therapies to be used  What methods for patient treatment response and toxicity monitoring  OUTCOME  Survival, health, quality of life of patient but also children, family, community  PREVENTION  Longitudinal studies with trends in behaviour, stigma, risk perception etc.

19. Group assignment  What are the priority issues for programmes that need strategic information?  What are the first steps that need to be undertaken (at country and international levels) to:  design a M&E system for ART programmes (planning, standardization, simplification, technology etc.)  assess the current capacity to develop / scale up a ART programme (situation analysis)  develop specific tools for monitoring and evaluation  provide relevant data for programmes through operations research  establish longer term research