Using routine data for cascade analysis in key populations: challenges and opportunities Virginia Macdonald, Annette Verster Key Populations and Innovative Prevention HIV Department, WHO, Geneva Keith Sabin Strategic Information UNAIDS, Geneva Maybe change title to using patient management and case surveillance

Information available through HIV patient monitoring systems HIV+ status Linkages to HIV care, TB, HBV/HCV, MNCH and ART start ART monitoring, adherence, short and long term outcomes ART retention ART viral suppression Death

Risks of collecting information about key population identity or risk behaviour which can be linked to an individual include: Data used by law enforcement officers to identify key population members for questioning, detention or arrest; Awareness among patients that information on criminalized behaviours is being recorded may result in under-reporting of risk behaviours and/or avoidance of that health service, and, Patients may be discriminated against by health care workers and other service providers based on their behaviour or sexual identity

Recommendations from the consolidated guidelines on person-centred HIV patient monitoring and case surveillance, WHO, 2017: For collection of data at facility based ART services Routinely collected data can be used to describe access by key populations to services; however, confidentiality and security issues are paramount when collecting data related to KP In most settings, patient monitoring records should not include the KP category and any information collected should be used to support patient management and referral to care. Individual information related to key populations and criminalised behaviours should not be included in ART registers or reported up to subnational or national data management units Say that this is patient monitoring only – not for NGOs, CBOs

Follow-up viral load test Deaths among people diagnosed with HIV HIV case surveillance SENTINEL EVENTS/ INDICATORS First positive test First CD4 test First prescribed ART; First viral load test Follow-up viral load test Deaths among people diagnosed with HIV CASCADE INDICATORS PLHIV aware of status PLHIV in care PLHIV on ART PLHIV virally suppressed Data collected here (case report form) can allow disaggregation by key population

Specific considerations related to recording gender in patient records In settings where being transgender is highly stigmatized or penalized it is acceptable to include only two categories (male or female) for gender on clinic records. In other settings, consideration should be given to including the following two questions when recording gender on clinical forms. This will allow for better patient management and disaggregation of data by different gendered groups: 1. Current gender (check all that apply) Male Female Transgender male Transgender female Additional category (please specify): 2. Sex assigned at birth

Limitations to using case surveillance for KP cascades Not all countries have functioning case surveillance systems Disaggregation usually dependent on data collected on case report forms May not allow disaggregation to all key population groups People’s behaviours are fluid Under-reporting of risk behaviours

How can we collect the data about key populations that we need?

Beyond routine data IBBS or simplified IBBS Community lead, focussed surveys Making better use of rapid assessment and mapping data Using city, hotspot, local data Extrapolation and triangulation Linkage of CBO and facility data Online surveys