Practicing Out of the Box: The Research Challenges of Caring for HIV Substance Users

1. Practicing Out of the Box: The Research Challenges of Caring for HIV+ Substance Users Chinazo Cunningham, MD Division of General Internal Medicine Dept of Family and Social Medicine MMC/AECOM

3. Background Montefiore Medical Center CitiWide Harm Reduction CBO serving HIV-infected drug users living in SRO hotels in NYC Started as needle exchange program in 1994, now offers numerous programs Collaboration with Montefiore since 1998 Medical care/outreach Research/evaluation

4. CitiWide�s programs Outreach in SRO hotels Needle exchange Case management Health services Mental wellness Support groups Peer education Housing Holistic health Transportation Clothing, showers, meals Research/Evaluation

5. Health Services Program

6. SRO Hotel Residents

7. Research & Evaluation

8. Objectives / Model

9. Evaluation of a Medical Outreach Program Background Marginalized HIV+ populations have less access to care, poor health outcomes Outreach programs aim to improve access Few programs evaluated Objectives To evaluated a medical outreach program that targets HIV+ SRO hotel residents in NYC To examine patient- and program-related factors associated with keeping medical appointments

10. Methods Examined 2781 medical appt records (2003-2005) CitiWide and Montefiore databases Patient-related factors sociodemographic info Program-related factors Appt type: same day/walk-in vs. future appt Appt location: CitiWide vs. SRO hotel vs. CHCC Provider making appt: medical vs. non-medical Analysis Chi-square, regression analysis

12. Summary Overall 29% of appts were kept Program characteristics, NOT patient characteristics assoc with kept appts Appts kept more often when: At CitiWide�s drop-in center Same day / walk-in Made by non-medical provider

13. Implications Changed Health Services Program to provide more appts at CitiWide and same day/walk-in Medical community must examine program-related factors (not just pt-related factors) in delivery of care to marginalized HIV+ populations Same day access �One stop shopping�

14. SRO Hotel Residents

15. Comparison of self report vs. medical records HIV utilization measures Background Numerous studies examine HIV health services using self-reported outcomes Few studies examined validity of these outcomes in marginalized populations Crucial to understand validity of outcome measures for program evaluation Objective: To examine agreement between self-report and medical record HIV health services utilization measures

16. Methods Cross-sectional study design Sample 522 HIV+ individuals living in 14 SRO hotels in NYC Data Self report from ACASI Medical record extraction by MD Variables HIV-related ambulatory care visits (0, 1, >2 visits) HIV lab markers (CD4, VL) HIV-related medications (ART, PCP, MAC) Analysis percent agreement & Kappa statistic

17. Results

18. Results

19. Conclusions Agreement between self-report and medical records was: Poor for ambulatory visits (? = 0.09) Poor to fair for medication use (? = 0.23-0.43) Poor for lab tests performed (? = 0.06) Good for CD4 count value (? = 0.71) Most disagreement was from patient over-reporting When examining health services utilization in marginalized populations, the use of self-reported measures as outcomes raises concerns.

20. Partnership with the community & harm reduction

21. Benefits to working with a CBO Large number of community members in one place �Special population� not in clinical settings Facilitate trust Direct access to community (SRO hotels) Attractive to funders (community-based participatory research)

22. Challenges to working with a CBO Different priorities research vs. service Philosophical clash traditional medical system vs. harm reduction* Power, money, resources large academic medical center vs. small CBO Supervision / oversight Two different geographic locations Structural issues Computers, heating, supplies, payroll, etc Staffing professionals vs. para-professionals Salary differential. Cash flow problems. Staffing�turnover rate, unique person who is sophisticated and can work in this environment. Salary differential. Cash flow problems. Staffing�turnover rate, unique person who is sophisticated and can work in this environment.

23. Harm Reduction vs. Medical Model

24. Lesson Learned - Redefine Health Health is NOT the absence of disease Biopsychosocial model including� drugs housing support system finances violence criminal justice issues� Life priorities of HIV+ IDUs Only 37% ranked HIV as most important Top priorities: housing, money, safety from violence

25. Lessons Learned � Redefine Goals and Success Success is NOT just: Undetectable viral load Abstinence from drug use Success also includes: Making it to appointments Preventative care (PCP/MAC prophylaxis, vaccinations, PAP smears, PPD) Less, safer, more controlled drug use Improvement in non-medical areas (housing, support system, criminal activity, etc.)

26. Lessons Learned Working with a CBO is an investment Integration into CBO legitimizes the research notice problems before they become too big �buy-in� from other CBO staff Difficult to conduct research in setting where it is not a priority Need face-to-face time and close oversight of research staff Communication and transparency