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Andrea Zin Instituto Fernandes Figueira/FIOCRUZ, Rio de Janeiro, Brazil CBM Medical Advisor

9 IAPB General Assembly, Hyderabad, India Course 5: Data Collection and Information Management Monitoring and Evaluating ROP Clinical and Programme Outcomes in Latin America. Andrea Zin Instituto Fernandes Figueira/FIOCRUZ, Rio de Janeiro, Brazil CBM Medical Advisor

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Andrea Zin Instituto Fernandes Figueira/FIOCRUZ, Rio de Janeiro, Brazil CBM Medical Advisor

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  1. 9 IAPB General Assembly, Hyderabad, India Course 5: Data Collection and Information Management Monitoring and Evaluating ROP Clinical and Programme Outcomes in Latin America Andrea Zin Instituto Fernandes Figueira/FIOCRUZ, Rio de Janeiro, Brazil CBM Medical Advisor Childhood Blindness Subcomittee/ /IAPB LA

  2. DISCLOSURE STATEMENT Nothing to disclose

  3. Overview • Need for monitoring and evaluation: ROP MIS • Data collection issues for ROP programmes • Strengths and limitations of current approaches, and the potential for integration in health • How existing data can help decision making • Results based reports for stakeholders

  4. Need for monitoring and evaluation: ROP MIS • ROP blindness prevention in Latin America: • ROP is the main cause of childhood blindness* • ROP is an indicator of quality of neonatal care • Magnitude: • at least 42,000 babies BW < 1,500 to examine/year • Over 4,000 treatments/year • Multidisciplinary approach: nurses, neonatologists, ophthalmologists • Multilevel prevention approach: primary, secondary and tertiary • * Gilbert C. Retinopathy of prematurity: a global perspective of the epidemics, population • of babies at risk and implications for control. Early Hum Dev. 2008;84(2):77– 82

  5. Need for monitoring and evaluation: ROP MIS • ROP blindness prevention in Latin America: • Several countries in the region now have policies and/or regulations, leading to financing structures for examination or for laser treatment: ROP programme implementation • Quality control is needed at different levels: neonatal care, eye care, programme • Challenge: lack of MIS for quality control • coverage, detection, population needing treatment, treatment rates and results • NICU, district, country/regional level

  6. Data collection issues for ROP programmes • Lack of standard data collection forms in several ROP programmes • Decision: data to be collected (accurate, precise, valid, timeliness, unbiased, relevant) • Indicators: clinical outcomes, programme outcomes • GIGO: garbage in = garbage out • Lack of dedicated trained personnel for data management: nurse, nurse technician? • Data entry • Quality control • Data security • Data storage • Data management: cleaning, descriptive analysis, associations • Neonatal outcome data: networking with nurses and neonatologists (some countries - neonatal networks)

  7. Strengths and limitations of current approaches, and the potential for integration in health • Web based ROP Network (PAAO/PAHO/cbm SiB): • www.redeneonatal.fiocruz.br/rop • Standardised data collection forms

  8. Strengths and limitations of current approaches, and the potential for integration in health

  9. Strengths and limitations of current approaches, and the potential for integration in health • Web based ROP Network (PAAO/PAHO/cbmSiB): • www.redeneonatal.fiocruz.br/rop • Diary system: avoid missing exams • Reports readily available, customized according to needs • Different levels of access: quality and security • Integration with Brazilian Neonatal Network • Neonatal outcome indicators • Monitoring and evaluation

  10. Report

  11. Strengths and limitations of current approaches, and the potential for integration in health

  12. Strengths and limitations of current approaches, and the potential for integration in health

  13. Strengths and limitations of current approaches, and the potential for integration in health 2009-2011

  14. Strengths and limitations of current approaches, and the potential for integration in health • Web based ROP Network (PAAO/PAHO/cbmSiB): • www.redeneonatal.fiocruz.br/rop • Web based: maintenance, access • Dedicated, trained personnel • Cost, sustainability • Opportunity: integration in health system

  15. How existing data can help decision making • Coverage • Level of care: neonatal indicators • survival, surfactant, sepsis, BPD • Screening criteria: BW and GA of treated babies • Quality of detection • Treatment results

  16. Results-based reports for stakeholders

  17. Results-based reports for stakeholders

  18. Mongolia Havana, Cuba Caracas, Venezuela Salvador, Brasil India Cali, Colombia Coimbature, India Guadalaraja, Mexico Lima, Peru Guayaquil, Ecuador

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