john aberle-grasse cdc gap strategies for building national-scale longitudinal patient monitoring...
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John Aberle-GrasseCDC GAP
Strategies for Building National-Scale Longitudinal Patient Monitoring Systems for HIV Treatment and
CareLusaka, October 2-5, 2007
Longitudinal HIV data for decision making at the local
through global levels
Longitudinal data systems purpose
Data uses to improve processes, performance, programming, and planning
Management/Care- routine patient statusMonitoring- routine program outputs & outcomesEvaluation- episodic program impact & effectSurveillance- episodic distribution and trends of disease and factors
Longitudinal data systems levels
LevelManagement/Care
Monitoring & Evaluation Surveillance
Patient X
Clinic X X
National X X
Global X X
Client interaction recordPaper or ElectronicStandard for Care/Clinical decision supportReduce duplication of effort and recordsLink to other data systemsInternational guidelines
ReportingEpisodic /Routine /Real time Automated/DashboardsReduce duplicationInternational guidelines
Support for systemsTrainingSuppliesSupervision
Longitudinal data systems characteristics
Level of data collection
PurposeMonitoring tools
Quantity
Global/Regional
National
District
Facility
Patient
Global/regional summary indicators
National summary indicators
District summary indicators
Facility registers, logbooks
Patient card/record
Summary indicators for global reporting (e.g.
UNGASS, UA, PEPFAR)
Indicators for district and national reporting and
planning
Clinical team management of groups of patients, case review, audits, drug supply management
Patient management
Less
More
Patient monitoring at different levels of the health care system
Sandy Gove, Tisha Mitsunaga - WHO
On HIV careOn ART
Start, Alive, Dead, Lost/Drop, Transfer out
Current regimenOriginal first-lineSubstitute to alternative first-line/second-line
CD4 test resultsFunctional statusAdherence/Regimen collected in last quarter
Essential HIV care and treatment data elements- Clinic/ National/Global levels
WHO: Patient Monitoring Guidelines for HIV Care and ART
Prior level elementsWhen registered for HIV careWhen started ART
Why eligible Reasons for switch/substitutionEach treatment interruptionAdherence
Pregnancy status, PMTCTStart/stop dates prophylaxis (CTX, Flucon, INH)TB treatment
WHO: Patient Monitoring Guidelines for HIV Care and ART
Essential HIV care and treatment data elements-
Clinic level only
Prior level elementsDate of each encounterWeightAdherence on CTXAdherence on INHPotential side-effectsNew OIs, other problemsTB status (other than Tx or prophylaxis)Referred or consulted with care providerNumber inpatient daysIf poor adherence on ART, reasons
Essential HIV care and treatment data elements-
Patient level
WHO: Patient Monitoring Guidelines for HIV Care and ART
Level of data collection
PurposeMonitoring tools
Quantity
Global/Regional
National
District
Facility
Patient
Global/regional summary indicators
National summary indicators
District summary indicators
Facility registers, logbooks
Patient card/record
Summary indicators for global reporting (e.g.
UNGASS, UA, PEPFAR)
Indicators for district and national reporting and
planning
Clinical team management of groups of patients, case review, audits, drug supply management
Patient management
Less
More
Patient monitoring at different levels of the health care system
Sandy Gove, Tisha Mitsunaga - WHO
Uses of data to improve processes and performance – Patient Level
Management/CareReinforcing standard patient interaction (including data quality)Support minimum critical standard data setAutomated notification
BMI AdherenceCD4
Link to other data systems
Uses of data to improve processes and performance – Clinic Level
Management/CarePatient managementTransfers trackingLinkage to other data systems
Monitoring & EvaluationRecruitment equityReasons for starting ARTOutcomes AdherenceART regimenHIV DR early warning indicators Supplies managementData quality
Uses of data to improve processes and performance – National Level
Monitoring & EvaluationRecruitment equity Outcomes ART regimenSupplies management/Drug procurementPlanning and resource allocationData quality
SurveillanceHIV DR early warning indicatorsPrevalence/IncidenceImpact assessmentPlanning and Resource allocation
Uses of data to improve processes and performance – Global Level
Monitoring & Evaluation Recruitment EquityOutcomes
Surveillance HIV DR early warning indicatorsPrevalence/IncidenceImpact assessment
Paper data system
Client interaction record
Manual clinical decision support
Episodic, routine reporting
Subsequent data capture
Manual clinical decision support
Episodic, routine and automated reporting
Paper/Electronic data system
Client interaction record
Automated clinical decision support
Longitudinal data systems
Episodic, routine, automated, and real time reporting
Real time clinical decision
support
Electronic data system
Provider interactive
client record
System developmentAutomation
System burden
Paper to electronic
System typePatient card
or record Registers
Cross-sectional and cohort reports
National/ regional reports
Paper-based system with electronic entry of reports
Paper Paper Paper Paper electronic
Paper-based system with electronic registers
PaperPaper electronic
Electronic Electronic
Electronic medical record (EMR) with electronic entry of paper records
Paper electronic
Electronicor may be printed from electronic database
Electronic Electronic
EMR - direct electronic entry (no paper) when managing patients
ElectronicElectronicorn/a
Electronic Electronic
– Data collected and aggregated by health facility clinical team
Sandy Gove, Tisha Mitsunaga - WHO
Key Issues forEmergency Plan
Support clinical decisions/standard of careScale up of longitudinal data systems as HIV care programs scale upProvide evidence based decisions at all levelsEliminate duplication, in and between countriesEncourage and share innovation and best practices