1. COMMUNITY HEALTH ADVISORY & INFORMATION NETWORK (CHAIN) PROJECT NYC HIV PLANNING COUNCIL Needs Assessment Committee Angela Aidala April 1, 2008

2. Introduction: Planning Questions What services do HIV+ persons need? Where do they go for care? What are their unmet needs/ service gaps? What populations are underserved? What works well, what doesn’t work? What are the barriers and access issues? WHERE SHOULD WE PUT OUR MONEY?

3. CHAIN PROJECT GOALS To provide a profile of PLWH/A in New York City and the Tri-County Region To assess the system of HIV care – both health and social services – from the perspective of people living with HIV To report on unmet needs, service utilization trends, and outcomes to the Planning Council and its Committees

4. History of CHAIN Initially developed in 1993 as one of the Planning Council’s evaluation resources Contract with Columbia University Public Health Over time CHAIN has recruited 3 representative cohorts of PLWH/A - NYC I (1994-2002, n=968) - NYC II (2002-present, n=693) - Tri-County (2001-present, n=298) A Technical Review Team (TRT) which includes representatives of the Planning Council, Public Health Solutions, NYCDOHMH and WDOH oversees CHAIN

5. CHAIN Studies CHAN Adult Cohort I 1994-2001 Adolescent Study 1995 Tri-County Cohort 2001 - 2007 The Unconnected 1995 & 1998 & 2003 Ancillary Service, 1999 Social Comorbidities, 2000 Ryan White Impact, 2001 Personnel Needs 1995 - 1996 CHAN Adult Cohort II 2002 - present

6. 14 Year Highlights (1994-2008) 7,566 interviews with 2,176 respondents 850-item questionnaire 112 trained interviewers 100+ reports Multiple presentations to Planning Council, Council Committees, PPG, HAWG, provider and community groups, professional conferences

7. Steps in the Process Develop a research strategy Consult with stakeholders Develop research infrastructure Implement strategy Analyze & report on research findings Re-evaluate strategy Consult with stakeholders

8. The CHAIN Cohorts are Probability Samples 60,000 – 75,000 HIV+ adults in care in NYC (1994)

9. 60,000 – 75,000 HIV+ adults in care in NYC CHAIN = 700 PLWH (1994)

10. Selecting CHAIN Participants A 2-Step Process 1 st step: random selection of service sites from listing of all agencies serving HIV clients Medical and Social Service All Boroughs (or Counties) RW Funding vs. no RW 2 nd step: agency staff help with random selection of clients Random selection from client rosters Sequential enrollment

11. Recruiting CHAIN Participants Unconnected to Care Unconnected: Aware, no medical care, no case mgmt for 6+months Referrals from CHAIN agency recruited participants Accompany Outreach Workers Open recruitment and screening in street and community settings

12. Collecting Data Comprehensive in-person interview Follow-up interviews annually Interviews in homes or agency settings Community-based interviewing team $25 incentive for every interview + referral resource High retention rate: 80% - 95% of eligible participants at each wave

13. Topics Covered Current health & mental health status Family, housing, work, resources Outlook on life Risk behaviors – sex & drugs History and use of medical services History and use of social services Needs, satisfaction, barriers

14. Comparison of CHAIN Participants with Surveillance Data Cumulative AIDS Cases, NYC† CHAIN COHORT 1 1995-2000 1994-2001 n 29,046 579 MALE Non-Hispanic White 21% 21% Non-Hispanic Black 43% 48% Hispanic 34% 30% Asian, NatAm, Other 2% 1% FEMALE 11,714 389 Non-Hispanic White 9% 6% Non-Hispanic Black 57% 63% Hispanic 33% 31% Asian, NatAm, Other 1% <1% † NYC DOH HIV/ AIDS Surveillance Program

15. Comparison of CHAIN Participants with Surveillance & RW Encounter Data

16. Analyze & Report Prepare data for analysis Work with Council & staff to define topics Consult with stakeholders - What emerging issues should be investigated? - What subgroup comparisons? Prepare draft of reports and get feedback Disseminate final reports

17. Ways of classifying PLWH/A Gender Male / female / transgender Race / Ethnicity White / Black / Latino / Other HIV risk exposure group MSM / PDU / MSM + PDU / Hetero & Other Stage of illness AIDS / HIV symptomatic / HIV asymptomatic Age 20-34/ 35-49/ 50+

18. Types of Analyses Descriptive (rates, percentages, trends geomapping) Analytical Are there group differences? Do certain models of care, interventions, or policies make a difference? Multivariate analyses – considering the effects of many factors taken together

19. Assessing the System of Care Trend data Outcome measures Individual factors associated with outcomes Systemic factors associated with outcomes

20. Outcome Measures Appropriate medical care In-patient use & length of stay Recent opportunistic infection (OI) T-cell changes ARV and HAART utilization & adherence Health and mental health functioning Mortality

21. Individual Factors Sociodemographics: gender, race/ethnicity, age, education, income, poverty area Health: self-reported physical and mental health status, t-cell, OI, ARV, HAART Risks: HIV risk behavior, drug use, unstable housing Medical care: provider type, primary care characteristics, insurance coverage

22. Example: Medicaid Trends by Provider Percent of Respondents with Medicaid by Wave of Interview, 1994-2001

23. ETHNICITY** GENDER BOROUGH HIV RISK ** significant (p<0.01) Percent reporting need Example: Estimating Mental Health Needs Average

24. Example: Increasing the Odds of Accessing MH Services among Clients with Service Need

25. The Value of CHAIN Patterns and proportions we see in the sample can be used as estimates for the broader HIV+ population Over time data can show changes in needs as well as effects of services and system wide interventions Provides broad range of evidence about service needs and outcomes from the point of view of persons living with HIV/AIDS

26. ACKNOWLEDGMENTS A Technical Review Team (TRT) provides oversight for the CHAIN Project. In addition to Peter Messeri, PhD, Angela Aidala, PhD, Gunjeong Lee, PhD, and Maria Caban, MA, of Columbia University’s Mailman School of Public Health, TRT members include Mary Ann Chiasson, DrPH, Public Health Solutions, Inc. (Chair); Jan Carl Park, MPA, Nina Rothschild, DrPH, Office of AIDS Policy and Community Planning; Clarissa Silva, MSW, Daniel Weglein, MD, and Fabienne Laraque, MD, Office of Evaluation and Quality Assurance; Ellen Wiewel, PhD, HIV Epidemiology and Field Services Program and JoAnn Hilger, Director, Ryan White Services, New York City Department of Health and Mental Hygiene; Julie Lehane, PhD, Westchester County Department of Health; Jennifer Irwin, MPH, Roberta Scheinmann, MPH, Public Health Solutions. CHAIN reports are solely the responsibility of the researchers and do not necessarily represent the official views of the U.S. Health Resources and Services Administration, the City of New York, or Public Health Solutions. I