1. Washington D.C., USA, 22-27 July 2012www.aids2012.org Sources of data: estimates of the size of key population groups – mortality data Peter Ghys, UNAIDS Txema Calleja, WHO Paloma Cuchi, UNITAID John Stover, Futures Institute

2. Washington D.C., USA, 22-27 July 2012www.aids2012.org STI Surveillance S econd Generation Surveillance HIV and AIDS case & mortality reporting Behavioural or Bio-Behavioural Surveys Sentinel Surveillance Size Estimation of Risk Groups

3. Washington D.C., USA, 22-27 July 2012www.aids2012.org Contribution of a subpopulation to the HIV epidemic is determined by HIV prevalence + risk behaviors + size of subpopulation: –Small population + high HIV incidence + efficient bridge/interactions = important role to the epidemic –Big population + low prevalence = main contributor HIV epidemic Use of the SE data: –National estimates: policy, response planning, resource allocation, advocacy, Understanding HIV surveillance –Local estimates: program planning and management (assessing commodity, coverage, HIV program evaluation)

4. Washington D.C., USA, 22-27 July 2012www.aids2012.org Few countries with good size estimation of sub-pops at risk No regular, scientific SE studies & trends Subpopulation "hidden" and poorly characterized Not triangulated & validated w/multiple sources Ad hoc assumptions often made in projection Point estimates instead of time-varying trends (size change over time) Pressure to use “official” estimates & politics Low accuracy, large uncertainty of SE estimates and HIV Estimates

5. Washington D.C., USA, 22-27 July 2012www.aids2012.org Methods based on data collected from at-risk population: Census/Enumeration, Capture- recapture, Multiplie r Methods based on data collected from general population: Population survey Network scale-up Limitations: Stigmatized populations need to disclose behaviors (e.g. illegal) Geographically limited (1 city, 1 neighborhood) = not nationally representative Collect data on 1 population at a time = multiple studies for a full picture

6. Washington D.C., USA, 22-27 July 2012www.aids2012.org Ideal but not feasible: ask respondents directly about their behaviors (national survey) Challenges: stigma, embarrassment, fear Ask respondents about acquaintances: national survey, behaviors of others Individual’s behaviors are not disclosed Each respondent’s personal network contributes to sample 8 countries: Moldova, Ukraine, Kazakhstan, Japan, China, Brazil, Rwanda Conclusions On the radar (stigmatized situations) Feasible in diverse circumstances & survey methods Not for every occasions, needs to be used appropriately and have data available Pending issues

7. Washington D.C., USA, 22-27 July 2012www.aids2012.org 2007 en Often multiple data sources are available: –Sizes of at-risk populations Studies from any of the methods (i.e. Capture-recapture) Mappings of higher risk sites Estimates from NGOs (service statistics) Police arrest records Security office estimates

8. Washington D.C., USA, 22-27 July 2012www.aids2012.org National ownership Build consensus and agreed on a single estimate Use the results No harm Determine use of SE Know what you know Use multiple methods to get a better estimate Deal with conflicting results Repeat study every 2-3 years

9. Washington D.C., USA, 22-27 July 2012www.aids2012.org STI Surveillance Second Generation Surveillanc e HIV and AIDS case & mortality reporting Behavioural or Bio-Behavioural Surveys Sentinel Surveillance S ize Estimation of Risk Group s

10. Washington D.C., USA, 22-27 July 2012www.aids2012.org 1. Incidence of HIV Infection 3. Mortality from AIDS 2. Prevalence of HIV Infection Underreporting, delays and misclassification to other causes of death in death registration systems

11. Washington D.C., USA, 22-27 July 2012www.aids2012.org Analyses of the overall mortality can gauge the level of HIV mortality Analyses for miscoding of AIDS deaths in vital registration data for S Africa, R Fed, Belarus, Ukraine and Thailand (Source and slides “HIV deaths in vital registration data” from Doris Ma Fat, Mortality and Burden of Disease Unit, Department of Health Statistics and Informatics, Dec 2010)

12. Washington D.C., USA, 22-27 July 2012www.aids2012.org South Africa 2004: Further analyses of trends and patterns are necessary to identify potentially misclassified HIV deaths Acute lower resp. inf -maleOther infectious dis - maleMeningitis - male Diarrhoea - femaleEndocrine disorders - femaleIll-defined injuries - male

13. Washington D.C., USA, 22-27 July 2012www.aids2012.org HIV has a significant impact on mortality Measuring HIV mortality to evaluate the impact of NAP’s efforts One of the clearest indicators of success is a decrease in HIV mortality Two of the 10 MDG require mortality data Provide evidence of equity in distribution of health services In many cases this information is not available

14. Washington D.C., USA, 22-27 July 2012www.aids2012.org Civil registration systems - gold standard Verbal autopsy – most common –Nationally representative sample vital registration with verbal autopsy (SAVVY) Facility-based mortality surveillance (e.g., HIV treatment and care facilities, hospitals, prisons, drug treatment facilities, morgues)

15. Washington D.C., USA, 22-27 July 2012www.aids2012.org Burial systems with verbal autopsy (cadaver autopsy,) Surveys & research –Population-based surveys with verbal autopsy (VA) (e.g., DHS and post-census mortality surveys) - retrospective –Prospective Demographic Surveillance Systems (DSS) with verbal autopsy (ALPHA Analyzing Longitudinal Population-based HIV/AIDS data on Africa) linkages between DSS participants and HIV prevention, treatment and care services

16. Washington D.C., USA, 22-27 July 2012www.aids2012.org Vital statistics (civil registration) Retrospective (household survey) “Facility”Prospective (community surveillance) Example National civil registration system Census; Demographic & Health Survey Cancer registry; Burial Society records Demographic Surveillance Site Coverage National National, Sample, or less but typically no denominator Limited Representative sample “SAVVY” sample registration system can be representative YesPossible but would require ample of sites based on use rates No Key analytical concerns Event report completeness and accuracy Reporting biases in numerator & denominator Facility use / coverage; Denominator is estimated Event report completeness; Numerator is estimate Use of Verbal Autopsy vs Medical Certificate MC implies physician diagnosis of cause of death; VA for national system is more costly and logistically challenging but can MC system Use VAMC possible in medical facilities; VA in most circumstances VA; MC if linked to health facilities with MDs

17. Washington D.C., USA, 22-27 July 2012www.aids2012.org 1.Data identification: multiple data sources need to identify all. Organization, creativity, ongoing 2.Data quality and completeness: evaluate all potential sources (strengths, weaknesses). Underestimation, quality (cause, date, sex, age…. ) 3.Data management: different sources & ways to collect data, duplications, use 4.Data Analysis: limitations in the analysis of mortality data

18. Washington D.C., USA, 22-27 July 2012www.aids2012.org 5. Future data issues: strengthening current systems, data collection, sharing systems and collaboration Short-term goals: obtaining measures of HIV mortality Longer-term goals: identify opportunities and advocacy strategies for health systems strengthening and creating strong civil registration systems

19. Washington D.C., USA, 22-27 July 2012www.aids2012.org Guidelines available on UNAIDS and WHO website WWW.UNAIDS.ORGWWW.WHO.INT