COMMUNITY HEALTH ADVISORY & INFORMATION NETWORK (CHAIN) PROJECT

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

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 ParticipantsA 2-Step Process • 1st 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 • 2nd step: agency staff help with random selection of clients • Random selection from client rosters • Sequential enrollment

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

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