1. HIV Surveillance Registry (HSR) New York City
Institute for Implementation Science in population health at cuNY
CUNY Graduate School of Public Health and Health Policy
AUGUST 2016
Disclaimer: The information in this slide set was assembled by the The Institute for Implementation Science in Population Health at CUNY to inform the work of the NYC DSRIP HIV projects. The content of these slides is based on publicly available information as of August
For detailed NYC HSR inquiries, see the resources and contact information slides.

2. OUTLINE Background Content How to use the data
Limitations and Strengths
Resources

3. BACKGROUND (1) What is surveillance?
Public health surveillance is the ongoing, systematic collection, analysis, and interpretation of health-related data essential to the planning, implementation, and evaluation of public health practice, closely integrated with the timely dissemination of these data to those responsible for prevention and control.
The HIV Epidemiology and Field Services Program of the NYC Department of Health and Mental Hygiene is authorized by the New York State Department of Health to conduct HIV/AIDS surveillance in NYC.

4. BACKGROUND (2) What is NYC HSR?
The HIV Epidemiology and Field Services Program manages HSR, which is a population-based registry of all diagnoses of AIDS (since 1981) and HIV infection (since 2000) in NYC that were reported to the DOHMH.
There are currently over 8 million HIV-related laboratory tests in the HSR
HSR is only accessible to staff within the HIV Epidemiology and Field Services Program and other trained staff within DOHMH

5. BACKGROUND (3)
HIV Epidemiology and Field Services Program. HIV Surveillance Annual Report, New York City Dept. of Health and Mental Hygiene: New York, NY. December 2015.

6. BACKGROUND (4) Population and Geography
All diagnoses of AIDS (since 1981) and HIV infection (since 2000) in New York City
From January 1, 2014 through December 31, 2014 in NYC:
there were 2,718 HIV diagnoses, and 1,432 AIDS diagnoses.
there were 119,550 people diagnosed with HIV/AIDS, reported in NYC and presumed to be living as of 12/31/14
There were 1,473 deaths (of any cause) among PWHA
How are HSR data collected in NYC?
Electronic reporting of laboratory tests
Direct reports by physicians (via the Provider Report Form)
Active field surveillance
Matching with registries
Case interviews and investigations by the Field Services Unit

7. BACKGROUND (5)
Events Reportable by Laboratories that conduct testing for NYC providers (as of 6/1/2005)
All positive diagnostic HIV tests
All viral load results, both detectable and undetectable
All CD4 test results
All viral nucleotide sequence results (for monitoring resistance)
Events Reportable by NYC Providers
Diagnoses of HIV infection
Diagnoses of HIV illness (i.e., HIV illness not meeting the AIDS case definition)
Diagnoses of AIDS-defining conditions
NOTE: Providers are required by New York State Law to report cases on the NYS Provider Report Form within 21 days of an HIV/AIDS-related event.

8. BACKGROUND (6) Timeframe of available data Accessibility of data
Detectable viral loads and CD4<500 reported to HSR beginning June 1, 2000
From June 1, 2005, all viral loads and CD4 values were required to be reported
NYC HIV Surveillance mid-year report for 2015 was released in April A full 2015 annual report will be released in December 2016.
There is a 6-month data reporting lag on surveillance data (see Limitations slide)
HIV EpiQuery currently has data from
Accessibility of data
The NYC HIV Epidemiology and Field Services Program (HEFSP) routinely disseminates data to the public
Specific data requests can be made and will be filled based on the HEFSP data release policy and standard practices

9. CONTENT What’s in the HSR data set HIV-related indicators
De-identified patient information
Demographic variables (sex, race/ethnicity, age group, address at diagnosis and most current address)
Provider information
Area-based poverty
Date of death
HIV-related indicators
Date of HIV and/or AIDS diagnosis
Concurrent HIV/AIDS diagnosis (AIDS diagnosis within 31 days of HIV)
Every CD4 or VL lab ordered by a NYC provider and reported for each patient
Transmission risk
Standard HIV care outcomes: timely linkage to care, retention in care, viral suppression

10. How to use the HSR data

11. HOW TO USE THE DATA (1) 1. Public Reports
The HIV Epidemiology and Field Services Program prepares
and releases multiple reports
each year on the HIV epidemic
in NYC. The HSR is used to
calculate # of new diagnoses,
prevalence, care outcomes, etc.
HIV Epidemiology and Field Services Program. HIV Surveillance Annual Report, New York City Department of Health and Mental Hygiene: New York, NY. December 2015.

12. HOW TO USE THE DATA (2): EpiQuery
The HIV EpiQuery system includes data on new diagnoses of HIV and AIDS in NYC; persons living with HIV/AIDS in NYC; and deaths among persons with HIV/AIDS for the calendar years Reported cases and case rates (per 100,000 population) and deaths and crude death rates (per 1,000 PWHA) are available by select variables: demographic (sex, race/ethnicity, age group, and place of birth), HIV transmission risk, and geographic (citywide and by borough, UHF neighborhood, high-risk neighborhood, and area-based poverty level).
HIV Epidemiology and Field Services Program. HIV/AIDS Surveillance Data EpiQuery Module. Dept. of Health and Mental Hygiene: New York, NY. 2016

13. HOW TO USE THE DATA (3): EpiQuery
How to use EpiQuery
1. Select data for either a single year or as a trend ( )
2. Choose HIV/AIDS outcome measure
3. Choose geographic unit
Citywide, borough
3. Choose demographic/
risk factors

14. HOW TO USE THE DATA (4): EpiQuery
HIV EpiQuery output example
Can export data tables into Excel
HIV Epidemiology and Field Services Program. HIV/AIDS Surveillance Data EpiQuery Module. Dept. of Health and Mental Hygiene: New York, NY. 2016

15. HOW TO USE THE DATA (5): CSR
3. HIV Care Status Reports System
An electronic system for provider-initiated queries against the NYC HIV Surveillance registry to determine the current HIV care status of lost-to- care patients
For information on user registration:

16. HOW TO USE THE DATA (6): CSR
Eligibility for the CSR system:
Users: physician or other person whose facility is located in New York City and is authorized to order diagnostic HIV tests to make a confirmed diagnosis of HIV, OR provide regular medical care for persons living with HIV
Patients: “out of care,” defined as patient with a new, confirmed HIV diagnosis who did not link to HIV care in the past ≥12 months at the diagnosing facility, OR patient previously diagnosed with HIV who was in care but has no HIV-related lab tests reported to Surveillance in the past ≥12 months

17. HOW TO USE THE DATA (7): CSR
Follow-up needed: the provider will need to continue efforts to return the patient to care as the queried patient DID NOT meet the NYC DOHMH’s criteria for being in care in NYC and is not known to have died
No additional follow-up needed/in-care: the provider does not need to continue efforts to return the patient to care as the queried patient DID meet the DOHMH’s criteria for being in care elsewhere in NYC
No additional follow-up needed/deceased: the provider does not need to continue efforts to return the patient to care as the queried patient is known to DOHMH to be deceased

18. HOW TO USE THE DATA (8) Potential use of HSR to further DSRIP PPS work
Publically available NYC Surveillance data resources can be used to better understand the HIV epidemic in NYC. Reported data such as the number of new diagnoses and the number of persons living with HIV may be used in grant applications and data presentations.

19. EXAMPLE OF DATA USE (1): NYLinks
NYLinks was created through a HRSA HIV/AIDS Bureau sponsored Special Projects of National Significance. NYLinks focuses on improving linkage to care and retention in care in New York State, and aims to improve systems of monitoring, recording, and accessing information about HIV care in NYS.
One facet of data monitoring within NYLinks utilized NYS and NYC HIV Surveillance Registries. Using the HSR, NYLinks has been able to monitor regional HIV care outcomes through the identification of labs reported to the HSR via NYLinks-participating HIV diagnosing and care providers.

20. EXAMPLE OF DATA USE (2): NYLinks
NYLinks data visualization using NYC HSR data

21. LIMITATIONS What to keep in mind: Surveillance data reporting lag
Reporting of new diagnoses and HIV-related laboratory tests are considered complete after a 6 month lag time. Data becomes available to surveillance epidemiologists approximately 2 months following lag (i.e. complete estimate of new 2015 diagnoses not available until ~September 2016).
Surveillance data provide a proxy measure of care
Reported CD4/VL indicate a medical visit, and may or may not indicate an HIV care visit. A lack of a reported CD4/VL does not necessary equal no care – a visit could occur with no labs drawn. No VL data does not always = lack of viral suppression.

22. STRENGTHS
The NYC HSR data source allows for monitoring of the HIV epidemic at a multitude of levels
Citywide, borough, UHF, ZIP code
Single providers, as well as across multiple providers
Allows for a benchmark of HIV care outcomes for a provider versus a region, or citywide
With important differences in mind, Surveillance data can be used as a comparison of provider-collected data, for quality control

23. RESOURCES Publications and reports
NYC HIV Epidemiology and Field Services Program:
Surveillance Reports:
Surveillance Statistics:
Surveillance Slide Sets:
Data & data requests
EpiQuery – HIV Module
HIV Care Status Reports System
HIV Care Continuum Dashboard
ETE Dashboard
NYC HIV Surveillance data requests and general questions
Guides/guidelines and other general information
NYC’s HIV Field Services Unit program – partner services law and guidelines, and the Contact Notification Assistance Program
Other information on HIV/AIDS in NYC

24. CONTACT INFORMATION
For more information on the NYC Department of Health and Mental Hygiene’s HIV Epidemiology and Field Services Program, and on data from the NYC Surveillance registry
or call 311

25. CUNY Institute for Implementation Science IN population health
Thank you!
CUNY Institute for Implementation Science IN population health
cunyisph.org