1. www.mesh-consortium.org.uk FRBS01 Adopting routine patient-level data to track the HIV epidemic and to inform HIV prevention and treatment strategies: a focus on Eastern and Southern Africa Daniel Low-Beer George W. Rutherford

2. Vision To maximize the potential of data routinely collected through HIV surveillance and service delivery platforms to provide timely information on key outcomes in relevant populations at a level appropriate to support resource allocation and realignment. Work groups Case-based surveillance Guidelines development Key populations Mortality

3. Partners

4. #AIDS2016 | @AIDS_conference Use of HIV case-based surveillance in Africa and the Caribbean to inform prevention and treatment efforts Ermane Robin, Haiti National AIDS Program Lucy Slater, NASTAD Sandy Schwarcz, UCSF

5. #AIDS2016 | @AIDS_conference HIV CASE-BASED SURVEILLANCE BACKGROUND

6. #AIDS2016 | @AIDS_conference What is public health disease surveillance? Collects and submits to a public health agency – Individual-level information of persons with a notifiable disease – Includes information on person, place, and time – Collects name and contact information for interventions Essential component of disease control efforts – Detects outbreaks – Characterizes populations at risk for disease and in need of intervention – Measures impact of control efforts

7. #AIDS2016 | @AIDS_conference Why implement HIV CBS now? Entered the treatment era with potential to stop transmission CBS can provide an accurate (unduplicated) measure of the care cascade indicators Measure progress towards 90-90-90 targets Provides data at sub-national and national levels Can disaggregate data by age, sex, risk population, geography Facilitates targeting resources and evaluating program impact

8. #AIDS2016 | @AIDS_conference Ten global indicators, six collected by HIV CBS* *WHO. Consolidated Strategic Information Guidelines for HIV in the Health Sector. May 2015

9. #AIDS2016 | @AIDS_conference MESH SITUATIONAL ASSESSMENTS

10. #AIDS2016 | @AIDS_conference MeSH Consortium CBS Working Group Scope of Work – Conduct distinct situational assessments to Identifying the strengths, weaknesses, opportunities, and threats (SWOT) of case based surveillance and patient monitoring systems Inform the development of WHO CBS guidelines Provide recommendations to countries for CBS Countries – Tanzania, South Africa, Kenya, Haiti Developed standardized protocol and tool – Desk review of data collection tools and other relevant documents – Interviews with stakeholders – Site visits

11. #AIDS2016 | @AIDS_conference KENYA

12. #AIDS2016 | @AIDS_conference Focus of the Assessment Follow-on to CBS pilot where reports obtained by surveillance officers or paid facility staff Explore less human-resource intensive reporting methods

13. #AIDS2016 | @AIDS_conference Areas Assessed Provider-based reporting (passive reporting) – Feasibility and acceptability Electronic medical records & data warehouse – Data completeness and quality – Interoperability – Functionality Laboratories – CD4 and HIV RNA testing – Data variables – Information management systems – National EID and viral load database

14. #AIDS2016 | @AIDS_conference Findings: Strengths Provider reporting – Standard forms and registers are used – Feasible for HTC counselors to report EMR reporting – Facilities with more than 500 patients have EMRs – EMRs have data required for CBS except for incomplete date of diagnosis (transfer patients) – Historical data entered – Data warehouse collecting data quarterly Laboratory reporting – CD4 and viral load routinely conducted – Seven regional labs for viral load and EID and have LIMS – Standard requisition form for viral load has sufficient information for CBS 14

15. #AIDS2016 | @AIDS_conference Findings: Weaknesses Provider reporting – Too burdensome for health care providers EMR reporting – Unreliable internet (some EMR are internet based) – Unreliable power source – Insufficient IT support – Difficult to submit data to warehouse Laboratory reporting – CD4 results mostly in paper registers – National database for viral load and EID does not have names or personal identifiers – Standard viral load test requisition form not used – Six of seven viral load laboratories do not collect names – Rapid HIV test results not available at labs

16. #AIDS2016 | @AIDS_conference Findings: Opportunities Provider reporting – HIV reporting by HTC counselors EMR reporting – Create HTC module for EMR – Potential for a data mart within the data warehouse Laboratory reporting – Collect and maintain names in LIMS – Use the national form for requesting viral load tests

17. #AIDS2016 | @AIDS_conference Findings: Threats Provider reporting – HIV retesting is common; registers need additional identifiers to de- duplicate records EMR reporting – Infrequent data back-ups – Poor data quality Laboratory reporting – LIMS at 6 regional labs not designed to collect names – Long turn around time – Results often e mailed insecurely – Reagent stock-outs

18. #AIDS2016 | @AIDS_conference HAITI

19. #AIDS2016 | @AIDS_conference What is reported? Reporting for new HIV dx includes: Date and location of HIV dx, patient demographic info, risk factors, tx referral date and facility Reporting for longitudinal clinical outcomes includes: Date and facility of entry to care, Date ART started and tx regimen, CD4 results, VL results, pregnancy status, patient death, date of all clinical visits These data were updated last year to be more complete and detailed

20. #AIDS2016 | @AIDS_conference Focus of the SWOT Assessment Different than other MeSH assessment because a “mature” system exists Key questions – How was the system developed over time? – What are the system inputs and human resource needs? – What data can be generated for epidemic monitoring, resource allocation and program planning? – What lessons learned in Haiti can be applied to CBS development for other limited-resource settings? Given that the system was recently updated to include many more clinical variables, are there emerging needs for resources, administration, or technical practice?

21. #AIDS2016 | @AIDS_conference Areas Assessed Review of CBS methods, including required variables, data inputs, system architecture, and system administration, Document revision: Operations manual, Protocol, data evaluation, data reports, cost estimations, etc. Interviews and visits with key partners at the national, regional and site levels to assess – Perceptions about system usability, utility, integration with other public health surveillance, level of effort needed for reporting and administration

22. #AIDS2016 | @AIDS_conference Findings: Strengths System capable of producing care cascades and related data at national and subnational levels “Census” of diagnosed HIV cases (not sentinel surveillance) based primarily on health system data Minimal cost: uses existing infrastructure and data Personnel contributing to the system at the site level were described by assessors as “available, trained and motivated” Surveillance system can have positive cross cutting benefits in that it can be used to help strengthen health system performance

23. #AIDS2016 | @AIDS_conference Findings: Weaknesses Data transfer process from EMRs still improving (not always on time) Mortality data are not regularly captured, no vital record system in Haiti Key population data (CSW, MSM) are incomplete Private facilities are not included in surveillance— effect/magnitude of missing data is unknown

24. #AIDS2016 | @AIDS_conference Findings: Opportunities Strong leadership and ownership by MoH NAP Willingness of MoH NAP to integrate HIV CBS with other national surveillance systems An initiative is under way to optimize data visualization System funding secured in the short- and mid-term As system evolves, the SALVH platform/methods could be leveraged for other surveillance in Haiti Although system is currently managed by an NGO, transition to MoH is planned in coming years Local capacity exists for system management and data analysis

25. #AIDS2016 | @AIDS_conference Findings: Threats Perception that the system is too expensive, not sustainable Perception that SALVH is a donor effort and not locally-based System could be better integrated with other surveillance efforts Many clinical indicators are collected—could be difficult to maintain

26. #AIDS2016 | @AIDS_conference Example of CBS data use: Patient Linkage Initiative

27. #AIDS2016 | @AIDS_conference CONCLUSIONS AND RECOMMENDATIONS

28. #AIDS2016 | @AIDS_conference Conclusions and Recommendations CBS feasible, acceptable, in resource-limited countries CBS can leverage existing systems for efficiency Reporting from multiple sources improves ascertainment of sentinel events Systems should match the capacity at the national sub-national, and facility levels Consider resources for developing and sustaining the system Needs political will and MoH support Allow time for system to mature Summary SWOT report available at: www.mesh-consortium.org.uk