1. 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

2. 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

4. 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

6. 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

7. 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

11. 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

12. 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

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

14. 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