Establishing and using individual level data for HIV Program: Nigeria s Experience September 14, 2017 PEPFAR Applied Data & Systems Learning Summit
Presentation Outline Background Overview/Objectives of the initiative Overall Strategy Methodology Requirement Analysis Document (RAD) National Data Repository (NDR) deployment PMTCT e-tracking Sample Dashboards Challenges Future Plans 2
Nigeria Located in Western Africa, Nigeria is the continent s most populous country with more than 130 million people Over 250 ethnic groups 36 states, with a Federal Capital Territory, 774 LGAs Belt of rain forests inland http://travel.nationalgeographic.com/travel/countries/nigeria-facts/ Oil-rich Niger Delta in the South High savanna-covered plateaus in the north
Background HIV Epidemics is dynamic therefore tracking and characterization of the epidemics change frequently Effective monitoring of UNAIDS 90:90:90 Goal requires robust longitudinal and individual record linkages Several EMRs in use by partners for PMM and reporting Independent and parallel use does not facilitate national patient de-duplication EMR may serve as a solution to most of these challenges, but inadequate infrastructures, weak systems, multiple EMRs, policy constraints limit large scale deployment 4
Overview Goal Establish a Centralized Health Data Repository that will support clinical decisions and Patient Management and Monitoring System Objectives Standardize HIV/AIDS EMR Implementation in Nigeria Rapidly Scale-up EMR deployment such that 90% of ART clients are managed though the system Implement robust PMTCT e-tracking System Establish efficient and effective data transfer from disparate EMR platforms to central database Develop robust interactive dashboard to aid Data Use Culture among stakeholders 5
Strategy Electronic tools at the level of patient care in Tertiary & Secondary sites Electronic repository at a central level Electronic transfer of information National Reporting Guidance PMTCT Real-time e- Monitoring 6
Methodology RAD National Guideline s NDR Deployme nt Dash board Needs Assessment Gap Analysis Standardization of EMR Implementation Implementation of 90% rule EMR deployment Messaging Algorithm Onboarding Data Quality/Cleaning PMTCT B+ realtime e-tracking Interactive Data Analytics Monthly NDR Bulletin/Report 7
Methodology - RAD 3 tools using mostly qualitative and open-ended questions: Implementing Partner assessment tool Stakeholder interview tool Site assessment tools Overarching Observations EMR considered as data management and reporting tool IPs support sites with different EMRs Inconsistent use of unique identifiers Providers feel EMR reduces overhead cost in PMM Similar clinical work and data flows Consistent availability of electric power and internet connection (through alternative backups) Commonly used technologies - JAVA, Micrsoft.net and SQL databases 8
Similar clinical work and data flows Unknown status HIV Testing and Counseling Voluntary New patient visits hospital Non voluntary Records unit (Registration) HIV negative Exit HIV positive Ready Adherence counselling 3 sessions* Not ready Know HIV status Adult/Pediatric OPD, Inpatient, DOTs, Blood Bank Enrollment (M&E)- Order Baseline laboratory Tests Elligible Laboratory Results ART clinic Non-eligible Pharmacy 2 week prescription of 1 st line regimen Non Eligible re-evaluate after 3 months
Methodology - NDR The Nigeria National Data Repository (NDR) provides a central, national scope repository of patient level data for diseases reported from EMR systems. Key features include: Leverages existing PEPFAR investments in EMR systems and patient data to answer routine and deeper questions EMR agnostic architecture to support onboarding and routine reporting for all facilities Patient centric, longitudinal tracking with focus on HIV clinical cascade and treatment with support for other diseases Platform to ask new questions without burdening Implementing Partners and facilities with data calls Implementer friendly architecture using XML based schema designed for EMR to public health transactions 10
Methodology - NDR Patient Centric Approach 11
File Transport (SSH File Transfer Protocol) NDR Logical Architecture National Data Repository (NDR) Information Architecture Data Source Models Central - Integrated Repository (IP) EMR IP Repository Central - Individual Extracts (IP) EMR IP Facility Extracts Facility Extracts (IP or FMoH) EMR Private Facilities EMR Paper based Facilities (IP or FMoH) Registry Generate NDR XML Message Generate NDR XML Message Generate NDR XML Message Generate NDR XML Message Package for NDR Data Processing & Analysis Transforming clinical data into actionable knowledge for public health Extraction, Transformation, and Load (SQL Server Integration Services) Common interface for import NDR XML Message Mgmt File Archive and Retention Validate, parse, and store NDR data Staging Reference Data Management Integrated Data Repository for public health Transactional Data Quality & Control Operations & Maintenance and Data Management Aggregate and line level analysis NDR Repository Indicators and Ad-hoc reports Data Source Onboarding (Engage, Connect, Validate, & Operate) Data End Points Nigeria Federal Ministry of Health DHIS USG Strategic Information Team DHIS & MERS Indicator analysis Line list analysis Ad-hoc analysis Addition of reportable diseases FMoH facility feedback Indicator analysis Line list analysis Ad-hoc analysis IP quality feedback Capacity analysis Matching and Deduplication Implementing Partners / Facilities IP Repository Cross facility analysis Data Extracts Indicator reconciliation Capacity assessment Information Standards Information Content Information Exchange Privacy and Security A Data New Standard Era of Accountability, Transparency, Identifier and Standard Solidarity to Accelerate Functional IMPACT Standard 12 Standard Standard Standard
NDR Onboarding Partners with data source for reporting Securely connect clinical data source to NDR Test completeness, quality, and usability Day to day monitoring and support Engage Connect Validate Operate Onboarding includes delivery of technical assistance, validation of NDR messages, prioritization of sites, management of Master Facility List reference data, and advisement on operating model for sustainable flow of EMR data from facilities to NDR. 13
NDR Methodology Continued National Data Repository Platform Diagnosis information for PLWH Monitoring & Pre-Treatment patients Care Card HIV Encounters Regimens Laboratory Results Longitudinal Viral Load Laboratory Results Graphic: UNAIDS, 90-90-90 An ambitious treatment target to help end the AIDS epidemic 14 14
Number of Sites Status of deployment in PEPFAR Supported Sites Percentage of High Volume Sites 1,800 High Volume Low Volume % High Volume 100% 1,600 1,400 1,542 86% 90% 80% 1,200 70% 1,000 800 600 400 1,220 26% 578 311 60% 50% 40% 30% 20% 200 322 267 10% - Total # Treatment Sites Total Fully onboarded (NDR) 0% 15
Self Service Data Exploration Data Visualization 16 16
Monthly NDR Bulletin Three Year Trend of Average Number of CD4 Laboratory Results Per Patient Data: Number of CD4 Laboratory Results per patient, per year, where Visit Date is in Reporting Period. A Laboratory Results correlates to the Laboratory Report element in the NDR Schema. Reporting Period: Calendar Year 2015, 2016, and 2017 Three Year Trend of Top 10 ARV Regimen Pickups Data: Regimen Pickups classified as ARV, per year, where Visit Date is in Reporting Period. An ARV Regimen Pickup correlates to the Regimen element in the NDR Schema. Reporting Period: Calendar Year 2015, 2016, and 2017 Detectable Versus Undetectable Viral Load Laboratory Report Results by IP by Month Data: All Viral Load Tests performed where Visit Date is in reporting period Reporting Period: 3 rd and 4 th Quarter of Calendar Year 2016 Number of Viral Load Laboratory Tests Performed by IP by Month Data: All Viral Load Tests performed where Visit Date is in reporting period Reporting Period: 3 rd and 4 th Quarter of Calendar Year 2016 17
Challenges Absence of unique patient identifier to aid deduplication EMRs mainly focusing on Care and Treatment technical area Low level of data-use-culture by stakeholders 18
Future Plans Introduce unique patient ident cation system to aid de-duplication possibility of using biometrics Add more technical areas OVC 1 st 90 TB Strengthen data-use-culture among stakeholder create forum for periodic dissemination of factsheets and monthly bulletins 19
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QUESTIONS? 21