Data to Care: An International Approach to Improving Health Outcomes
Lucy Slater
Senior Director, Global Program
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Funded by PEPFAR (CDC) since 2001
Focus on responding to identified program and organizational capacity needs of public health agency directors
Draw upon NASTAD members to develop peer relationships and provide technical support
Globally, we co-locate field staff with public health agencies for mentoring, guidance, and support
NASTAD Global: What We Do
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Uses HIV surveillance data to identify HIV-diagnosed individuals not in care, link them to care, and support the HIV care continuum
Approaches frequently used in the U.S.:
o Health Department Model - Health department-initiated linkage and re-engagement outreach
o Healthcare Provider Model - Healthcare provider-initiated linkage and re-engagement outreach
o Combination Health Department/Healthcare Provider Model - A combination of both approaches
What is Data to Care (DTC)?
https://effectiveinterventions.cdc.gov/en/HighImpactPrevention/PublicHealthStrategies/DatatoCare.aspx
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PEPFAR 1.0 – Emergency response. Focused on getting treatment and care to individuals (2004 – 2007)
PEPFAR 2.0 – Focused on country capacity, sustainability, country ownership and leadership (2008 – 2012)
PEPFAR 3.0 –”Right things, in the right place, at the right time”
Global Relevance of DTC
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Ten global indicators, six collected by HIV CBS*
*WHO. Consolidated Strategic Information Guidelines for HIV in the Health Sector. May 2015
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CBS system development and support Haiti, Ethiopia, Guyana, Trinidad and
Tobago, Guatemala, Nicaragua, Panama, South Africa
Regional CBS Workshops (42 countries)
Partner Services Ethiopia, Uganda, Haiti
Patient care linkage and ART adherence Haiti, South Africa
Global Contributions to DTC
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Lead authors of the Case-Based Surveillance Toolkit, a comprehensive guide for development of HIV CBS systems in resource-constrained settings
Toolkit will be included as an attachment in pending WHO CBS Guidelines, anticipated later in 2017
NASTAD Global Contributions to DTC
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Dr. Ermane Robin, Senior Technical Advisor, National AIDS Program, Ministère de la Santé Publique et de la Population (MSPP)
Jude Eddy Louis, NASTAD Haiti Country Director
Dr. Daniella Myriam Pierre, Patient Linkage & Retention Project Manager
Mark Griswold, NASTAD Global Senior Manager
Our Presenters
Completing the Puzzle:Data to Care
Initiatives in Haiti
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NASTAD Haiti Overview
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• First case of HIV was reported in Haiti in 1982
• HIV prevalence was estimated at 5% in the 1990s; now at 2%
• NASTAD has been working in Haiti since 2003
Background
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1. HIV case based surveillance (SALVH)
2. Enhanced perinatal HIV surveillance (SAFE)
3. Patient care linkage and retention (PLR)
4. Partner services
5. Capacity building for MoH
Project areas
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Our key partnersDirector General
DELR
LNSP
UPEDeptm’lDirectors UCC
PNLS
UGP DSF
NASTAD
Implementer
SOLUTIONS
IT platform
I-TECH
MoH EMR
GHESKIO
EMR
PIH
EMR
Health provider networks
1. Ministry of Health
2. NGOs
3. CDC Haiti and Atlanta
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NASTAD Haiti Staffing
Country DirectorJude Eddy Louis
Drivers(3 staff) SALVH Technical
Support(2 staff)
Data Manager
Office maintenance and security
(3 staff)PLR Technical
Support(2 staff)
National HIV & PMTCT
Surveillance Manager
Nadjy Joseph
Patient Linkage & Retention Project
ManagerDaniella Myriam Pierre
Finance and Admin Manager
Christine Durosier
SAFE Technical Support(1 staff)
Partner Services Coordinator
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• U.S. TA providers have always played a critical role in Haiti projects
• Haiti TA team has existed since 2003, when CDC and MoH asked NASTAD to conduct a Haiti CBS SWOT assessment
• Provides ongoing assistance
• Current TA providers:o Jami Stockdale (MD)
o Amy Robbins (NY)
o Jen Gunderman (University of New England)
o Kristiana Dhillon
• Past Haiti TA providers have come from VA, ME, FL, SF, LA, MN
TA Providers
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SALVH: HIV case-based Surveillance
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• SALVH defined: Surveillance Active et Longitudinale du VIH en Haïti)o In English: HeALTH (Haitian Active Longitudinal Tracking of HIV)
• SALVH serves to:o Use existing data sources to create a national dataset that is cleaned and de-
duplicatedo Facilitates data analysis for epidemiologic profiling and production of care
cascadeso Provide functional data linkages to both SAFE and PLR (more on this later in
the presentation)
• SALVH development has spanned 10+ years from piloting, to national implementation, to expansion of care variables.
Overview
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System Evolution
2005-2007 Planning and Pilots
2008-2009
National training and system implementation
2012-2014
EMR integration c. SAFE developed
2015 PLR developed
2016
System streamlined . Clinical variables expanded
2017Fingerprint added to dedup process
Data visualization platform implemented
TA for better site use of data
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• Name-based reporting of HIV is mandated by MoH
• Cases reported include:o New HIV diagnoses
o Previous diagnoses not yet reported
o Clinical data from people living with HIV who are in care
Case Reporting
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Summary of SALVH Data Elements
Case ID and demographics(name, sex, DOB, address, phone)
Transmission risk
Case matching and dedup
(Mother’s first name, town of birth, fingerprint)
Laboratory tests
(VL, CD4, STI, HBV, etc.)
All hospital visit data
Pregnancy
Medical record number(s)
HIV test data
TB testing, dx, tx
Disease stage
ART referral, receipt, regimen, adherence
Death
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SALVH Data Flow
iSanté GHESKIO PIHEMR EMR EMR
MESI(site interface)
SALVH
DASHBOARD (SISENSE)New HIV diagnoses
Patients enrolled in carePLR
Re-linkage of LTFU patients
SAFE
Perinatal HIV surveillance
• SALVH data feeds include• Electronic notification of
new cases from sites• Longitudinal clinical data
from EMRs
• SALVH exchanges date with both SAFE and PLR systems
• System captures an estimated 92% of cases
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• Data are available down to the community (commune) and institution levels
• Variety of epi and M&E reports available
• Longitudinal data can be used to
o Track clinical outcomes
o Analyze linkage to care
o Create care cascades at the national, regional, and facility levels
Data Use
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Data Visualization Dashboard (sample data)
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Data Visualization Dashboard (sample data)
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SAFE Project
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• MoH and its partners began implementing PMTCT programs in 1999
• 139 prevention of mother-to-child transmission (PMTCT) sites in place throughout Haiti
• Estimated that >75% of pregnant women are HIV tested
• Despite this, challenges remain
o Some estimates of vertical transmission in Haiti are as high as 9%
o An estimated 14.5k children under age 14 are HIV-infected
Background
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• In 2012, NASTAD worked MoH and the U.S. CDC to develop and implement a system of enhanced perinatal HIV case-based surveillance
• “SAFE” (Surveillance Active de Femmes Enceintes Seropositives), was implemented nationally in 2014
• Objectives:o Improve disease surveillance of HIV among mothers and infants, o Promote linkage and adherence to HIV care and treatment
Development
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• MoH requires that 10 “sentinel events” be reported related to HIV infection among pregnant women
• SAFE leverages existing PMTCT case management and data collection processes.
Development
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• PMTC Case Manager obtains demographic and clinical information from ANC registry
• CM logs onto SAFE platform by using an unique ID and confidential password
• HIV CBS Report Form is entered on the interface and populates core data in the online SAFE platformo SAFE cases are directly linked with HIV CBS
Process
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• During antenatal and postnatal care, key benchmarks are tracked and recorded
• System provides timed reminders to PMTCT case managers about patient care visits
• Case managers initiate outreach efforts as needed for the lost to follow-up patientso Using a checkbox on the electronic interface, SAFE links to
PLR System for LTFU patients
Process
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MOH Patient Registers
34
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• There are typically ~2,000 pregnant women actively followed by SAFE
• Data are compiled and analyzed to track epidemic progress and to monitor use and effectiveness of Haiti’s PMTCT system
• SAFE has improved reporting of HIV among pregnant women, but challenges remaino Initial diagnoses among pregnant women are well-reported (>90%), BUT
- Follow up visits are less well-reported- ~50% of women give birth at home
o Electricity, internet and high staff turnover contribute to reporting issueso Electronic PCR data from the national lab are now being integrated into SAFE,
but data quality issues need to be overcome
Outcomes
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PLR Project
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• MoH Clinical Goals:o Universal access to HIV care and treatment and the prevention of new
HIV cases
o Retention in care >= 80-85% of patients
o 90 90 90 UNAIDS goals for HIV program
• Gaps in the HIV Clinical Cascade:o Attrition rate is 46% after 5 years
o 36% diagnosed cases not linked to care
o 25% of the patients initiated on ART are lost to follow-up
Background
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• Health care sites use community health workers (CHW) for patient follow up in the field
• NASTAD was asked by MoH and CDC to create CHW tools and processes
• NASTAD developed the “PLR Toolkit” to help CHW reach out to HIV patients
• Project began enrolling sites in March 2015
Background
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• Improve patient linkage retention in HIV care and treatment through:
o Provision of effective, consistent community outreach tools and processes
o Access to real-time data about PLR to drive policy and practices
o Better tracking of CHW outputs and outcomes
o Improved tracking of community ART distribution
Goals of PLR
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• Tools and processes leverage existing data from EMRs and CBS
• Uses a secure online platform accessed through: o Mobile app: CHWs use hand held tablets to
securely enter data during patient home visits.
o Web-based interface: Site and national administrators monitor program performance
• Data are synchronized through the web app when connected, or via secure cellular data feed
Methodology
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Mobile App
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Mobile app
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PC Interface
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PC Interface
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• NASTAD produces reports that are shared with key partners to monitor site-level performance, including:o inactive patients to be contacted
o patients who have returned to care
o Patients receiving community ART from CHW (30 day and 60 day scripts)
Program Monitoring
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Summary of Tracking Activities
41,075
14,603
31,457
Total Phone calls Home visits
Tracking Reached
58%
60%
47%
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Reason Given for Missing Appointments2,721
2,190
1,547 1,483 1,454
1,134
571 543 423 409
Lacked moneyfor transport
Died Work conflict In careelsewhere
Forgotappointment
Too sick Usingalternativetreatment
Stigma Poor clinicexperience
Missedappointmentdue to travel
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PLR Cascade
51,061
41,042
19,915
12,448
LTFU patients targeted for PLR Patients contacted (calls and/orvisits)
Patients who returned to clinic Patients who returned andremained active in care
80%of total LTFU
49%of LTFU contacted
42%(of LTFU contacted)
62%of patients who returned to care
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Outcomes through April 2017
Unable to locate22%
Outcome in process9%
In care at another site4%
Refused to return
8%
Returned to clinc52%
Died5%
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• Monitor patient outcomes in conjunction with CBS clinical datao Better understanding of how ART retention impacts health outcomes
• PLR platform provides a chance to conduct other outreach activitieso Partner notification (beginning pilot phase)
o Key population outreach: MSM , CSW (MSM pilot in process)
Future Opportunities
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Summary:Fitting the pieces together
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• EMRs feed case report and clinic visit data to SALVH and PLR
• SAFE f/u is initiated by a SALVHcase report
• Mother-baby pairs identified by SAFE are reported to SALVH
Interconnected systems for DTC
SALVH
SAFEPLR
EMRs
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• LTFU cases in SAFE are electronically linked to PLR
• SALVH helps identify PLRpatients who migrate to other sites
• EMRs are updated using PLRdata (and soon, SALVH data as well)
Interconnected systems for DTC
SALVH
SAFEPLR
EMRs
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Mèsiampil !