John Aberle-Grasse CDC GAP Strategies for Building National-Scale Longitudinal Patient Monitoring Systems for HIV Treatment and Care Lusaka, 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 status Monitoring- routine program outputs & outcomes Evaluation- episodic program impact & effect Surveillance- episodic distribution and trends of disease and factors

Longitudinal data systems levels Level Management /Care Monitoring & EvaluationSurveillance Patient X Clinic XX National XX Global XX

Client interaction record Paper or Electronic Standard for Care/Clinical decision support Reduce duplication of effort and records Link to other data systems International guidelines Reporting Episodic /Routine /Real time Automated/Dashboards Reduce duplication International guidelines Support for systems Training Supplies Supervision Longitudinal data systems characteristics

Level of data collection Purpose Monitoring 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 care On ART Start, Alive, Dead, Lost/Drop, Transfer out Current regimen Original first-line Substitute to alternative first-line/second-line CD4 test results Functional status Adherence/Regimen collected in last quarter Essential HIV care and treatment data elements- C linic/ National/Global levels WHO: Patient Monitoring Guidelines for HIV Care and ART

Prior level elements When registered for HIV care When started ART Why eligible Reasons for switch/substitution Each treatment interruption Adherence Pregnancy status, PMTCT Start/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 elements Date of each encounter Weight Adherence on CTX Adherence on INH Potential side-effects New OIs, other problems TB status (other than Tx or prophylaxis) Referred or consulted with care provider Number inpatient days If 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 Purpose Monitoring 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/Care Reinforcing standard patient interaction (including data quality) Support minimum critical standard data set Automated notification BMI Adherence CD4 Link to other data systems

Uses of data to improve processes and performance – Clinic Level Management/Care Patient management Transfers tracking Linkage to other data systems Monitoring & Evaluation Recruitment equity Reasons for starting ART Outcomes Adherence ART regimen HIV DR early warning indicators Supplies management Data quality

Uses of data to improve processes and performance – National Level Monitoring & Evaluation Recruitment equity Outcomes ART regimen Supplies management/Drug procurement Planning and resource allocation Data quality Surveillance HIV DR early warning indicators Prevalence/Incidence Impact assessment Planning and Resource allocation

Uses of data to improve processes and performance – Global Level Monitoring & Evaluation Recruitment Equity Outcomes Surveillance HIV DR early warning indicators Prevalence/Incidence Impact 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 development Automation System burden

Paper to electronic System type Patient card or recordRegisters Cross- sectional and cohort reports National/ regional reports Paper-based system with electronic entry of reports Paper Paper  electronic Paper-based system with electronic registers Paper Paper  electronic Electronic Electronic medical record (EMR) with electronic entry of paper records Paper  electronic Electronic or may be printed from electronic database Electronic EMR - direct electronic entry (no paper) when managing patients Electronic or n/a Electronic – Data collected and aggregated by health facility clinical team Sandy Gove, Tisha Mitsunaga - WHO

Key Issues for Emergency Plan Support clinical decisions/standard of care Scale up of longitudinal data systems as HIV care programs scale up Provide evidence based decisions at all levels Eliminate duplication, in and between countries Encourage and share innovation and best practices