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 2016 . For detailed NYC HSR inquiries, see the resources and contact information slides.

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

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.

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

BACKGROUND (3) HIV Epidemiology and Field Services Program. HIV Surveillance Annual Report, 2014. New York City Dept. of Health and Mental Hygiene: New York, NY. December 2015.

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

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.

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 2016. 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 2006-2013 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

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

How to use the HSR data

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, 2014. New York City Department of Health and Mental Hygiene: New York, NY. December 2015.

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 2006-2013. 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

HOW TO USE THE DATA (3): EpiQuery How to use EpiQuery 1. Select data for either a single year or as a trend (2006-2013) 2. Choose HIV/AIDS outcome measure 3. Choose geographic unit Citywide, borough 3. Choose demographic/ risk factors

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

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: http://www1.nyc.gov/site/doh/health/health-topics/aids-hiv-care-status-reports-system.page

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

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

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.

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.

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

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.

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

RESOURCES Publications and reports NYC HIV Epidemiology and Field Services Program: http://www1.nyc.gov/site/doh/data/data-sets/aids-hiv-epidemiology-and-field-services.page Surveillance Reports: http://www1.nyc.gov/site/doh/data/data-sets/hiv-aids-surveillance-and-epidemiology-reports.page Surveillance Statistics: http://www1.nyc.gov/site/doh/data/data-sets/hiv-aids-annual-surveillance-statistics.page Surveillance Slide Sets: http://www1.nyc.gov/site/doh/data/data-sets/epi-surveillance-slide-sets.page Data & data requests EpiQuery – HIV Module https://a816-healthpsi.nyc.gov/epiquery/HIV/index.html HIV Care Status Reports System http://www1.nyc.gov/site/doh/health/health-topics/aids-hiv-care-status-reports-system.page HIV Care Continuum Dashboard https://www1.nyc.gov/site/doh/health/health-topics/care-continuum-dashboard.page ETE Dashboard http://etedashboardny.org/ NYC HIV Surveillance data requests and general questions E-mail hivreport@health.nyc.gov Guides/guidelines and other general information NYC’s HIV Field Services Unit program – partner services law and guidelines, and the Contact Notification Assistance Program http://www1.nyc.gov/site/doh/health/health-topics/aids-hiv-partner-notification-law.page Other information on HIV/AIDS in NYC http://www1.nyc.gov/site/doh/health/health-topics/aids-hiv.page

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 E-mail hivreport@health.nyc.gov or call 311

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