HOUSTON MEDICAL MONITORING PROJECT (HMMP)

1. HOUSTON MEDICAL MONITORING PROJECT (HMMP) Bureau of Epidemiology Office of Surveillance and Public Health Preparedness Houston Department of Health and Human Services

2. HMMP STAFF Adebowale Awosika-Olumo, MD, MS, MPH - Principal Investigator Salma Khuwaja MD;MPH;DrPH - Project Coordinator Taiwo Fasoranti, MD - Epidemiologist Osaro Mgbere, Ph.D. - Biostatistician/Data Manager Lydwina Anderson, BS-Surveillance Investigator Brian Goldberg, BA - Surveillance Investigator James Gomez, BA - Surveillance Investigator Karen Miller MS - Surveillance Investigator

3. Medical Monitoring Project Goals • Improve representativeness • Increase the number of project areas to include as many as possible • Increase relevance of data for use at the local level (Ryan White CARE planning groups, epi profiles) • Ability to have interview and medical record review data on same people

4. Questions MMP Data Can Answer Access to Care • What proportion of PLWH use multiple sources of care? • What are the met/unmet needs for medical services? • What are the barriers to accessing care? Treatment • What proportion of PLWH are receiving treatment and care according to the USPHS guidelines? • Of those eligible for ART, what proportion are prescribed ART? • What factors are associated with non-adherence to ART?

5. Questions MMP Data Can Answer Met and Unmet Need • What other types of services do they need? • Mental health services • Housing • Transportation Behaviors • What behaviors are PLWH engaging in? • Drug and alcohol use • Sex

6. Uses of MMP Data Local • Ryan White reporting requirements • Community Planning Group • Epi profiles • Evaluation of resource needs for treatment and care • Other stakeholders needs. • Nationally acceptable morbidity data picture National • Healthy People 2010 • Documentation of impact of Ryan White CARE Act-supported care • Treatment Guidelines • Evaluation of adherence to guidelines

7. Participation Selected providers who refuse to participate: • Will not be represented in MMP • And providers like them will NOT be represented • Refuse participation for all their patients Selected patients who refuse to participate: • Will not be represented in MMP • And patients like them will NOT be represented Maximum participation of providers and patients is essential for obtaining information that is truly representative of patients in care for HIV locally and nationally

8. Role of Providers in the MMP Locally • Promote and support the project • Assist the health department with recruitment of providers Nationally • Provider Advisory Board • Provide input on MMP data collection instruments • Provide technical assistance in development of provider education materials and recruitment

9. Role of Community in the MMP Locally • Local community involvement in the MMP is required • Many sites utilizing existing community planning groups/boards or creating a local MMP Community Advisory Board Nationally • Community Advisory Board • Provide input on MMP data collection instruments • Provide technical assistance in development of patient education materials and recruitment • Advise local and national investigators’ about the community’s perception of MMP

10. Summary • MMP will begin data collection in 2005 in 13 of 26 project sites • Through interviews and medical record abstraction this project will provide population based estimates of behaviors, the quality of care received and clinical outcomes of HIV-infected persons receiving care in the US • Data will be used for prevention and care planning, the allocation of resources, policy and decision making

11. Collaborators • Centers for Disease Control and Prevention (CDC) • State and Local Health Departments • National Institutes of Health (NIH) • Health Resources and Services Administration (HRSA) • RAND Corporation

12. What are the limitations of the old Surveillance tools?Why couldn’t the historical surveillance tools answer all these questions before now?

13. Historical Surveillance Tools • HIV/AIDS case surveillance in all states to collect a core set of information on persons with HIV and AIDS • Supplemental surveillance projects implemented to collect data on • Clinical outcomes • Behaviors • Access to care

14. Historical Surveillance Tools • Supplement to HIV/AIDS Surveillance (SHAS) • interview • 19 sites; 1990-2004 • Risk behaviors of persons with HIV infection • Reasons for testing • Factors associated with receipt of antiretroviral therapy • Adherence to therapy • Sex and drug use behaviors

15. Historical Surveillance Tools • Adult/Adolescent Spectrum of Disease (ASD) • medical record abstraction • 11 sites; 1990-2004 • Clinical outcomes of HIV infection • Trends and risk factors for opportunistic infections • Evaluate impact of treatment and prophylaxis on disease progression and survival

16. Historical Surveillance Tools • Survey of HIV Disease and Care (SHDC) • abstraction • 12 sites; 1999-2001 • Population-based • Clinical outcomes, treatment • SHDC+ • abstraction + interview • 3 sites in 2004 • Population-based • Clinical outcomes, treatment • Behaviors

17. Limitations of Historical Surveillance Tools • ASD and SHAS convenience samples • SHDC and SHDC+ population-based but not nationally representative • Limited areas participating • Lack of nationally representative estimates of persons infected with HIV who are in care • Type and quality of care received • Behaviors currently engaging in

18. Medical Monitoring Project Approach • Matched interview and medical record abstraction • 26 sites; 13 sites in 2005 • Annual multi-stage probability sample of adults in care for HIV in the US • Locally and nationally representative samples of HIV infected adults in care • Behaviors • Clinical outcomes • Type and quality of care received • Identify met and unmet needs for HIV care and prevention services

19. Medical Monitoring Project1st stage • Sites eligible • 50 states + District of Columbia + Puerto Rico • Sites selected • Probability Proportional to Size (PPS) • Based on prevalent AIDS cases within each area as of December 2002 • 20 areas selected • Based on available funds • Estimated to include >80% of US AIDS cases

20. Medical Monitoring Project Sampled Sites WA WA CHI OR OR MA NY NYS MI MI NYC PA SF PA NJ IN IL IN PHIL IL CA DE CA VA VA MD NC NC LA County SC SC High GA MS MS GA Moderate TX TX Low FL FL HOU PR PR

21. Medical Monitoring Project 2nd stage • Providers eligible • Health departments will identify all providers of HIV care • ART or CD4 or HIV viral load • HIV/AIDS Reporting System, Lab Reporting, ADAP, other sources • Providers selected • Probability Proportional to Size (PPS) • Will include large, medium and small facilities/clinics/practices • Approximately 40-60 providers selected per site • Public/private; HRSA/non HRSA

22. Medical Monitoring Project 3rd stage • Patients eligible • Selected providers will identify all eligible patients • ≥18 years old, HIV+, received HIV care during a specified period • Patients selected • Randomly sampled within each facility • Approximately 400 patients selected per site (>5,000 in 2005;>10,000 in 2006)

23. Interview/Abstraction Los Angeles, CA Michigan New Jersey Texas Houston, TX Washington Interview Only Delaware Florida Illinois Maryland Philadelphia, PA South Carolina 2005 MMP Activities: Data Collection Sites • Abstraction Only • New York City, NY

24. Databases Used • The data sources used in the construction of sampling frame were classified into two groups: HARS and NON-HARS (Outside data Sources). • HIV/AIDS Reporting System (HARS) was to serve as a “Gold Standard” in evaluating all other databases for completeness of facility lists. • The list of facilities reported in HARS in the last 5 years and other databases in the last one-year (2003-2004) were extracted and saved to “Source data” in appropriate folder. • These data sources were combined to develop Houston’s facility sampling frame.

25. NON-HARS Databases Used • Epidemiology Case File system • Outside Laboratories • Texas HIV Medication Program • CyberLab (Texas State Electronic Lab Reporting System) • Death Registry • HCHD Data System (Harris County Hospital District) • HCPH Reports (Harris County Public Health) • Infectious Disease Practitioners Database (Used for Quality Assurance).

26. Provider Participation • Providers will be asked to: • Provide a patient line list for May, June, July 2005 • Assist with contacting randomly selected patients to facilitate introducing patients to HMMP • Provide medical records for chart abstractions • Possibly provide space for in-person interviews if available.

27. Patient Participation • Patients will be ask to: • Sign a consent form to: • Participate in a (30 – 45 minute) in-person interview • Allow their medical records to be abstracted • Patients will be given a $30 gift certificate for their time • Patient names will not be given to CDC

28. HMMP Staff Participation • HMMP staff will perform the following • Assist providers with developing patient line list • Setup appointments with patients for interviews • Obtain consent from patients • Interview patients • Conduct medical record abstractions

29. Data Collection Interview Modules • Demographics • Access to Health Care • Adherence • Unmet Need • Sexual Behavior • Drug Use Behavior

30. Data Collection Chart Abstraction • Demographics • Insurance Status • Opportunistic Illnesses • Antiretroviral Therapy • Laboratory Data • Substance Abuse/ Mental Health • Referrals to other facilities/services

31. Treatment Quality Care Prevention Services Quality of Life Y-O-U Respect Adherence Social Support Access to Care Just one more thing and we can complete the puzzle. Houston Medical Monitoring Project

32. For further information contact: Salma Khuwaja, MD, MPH DrPH(Project Coordinator) Bureau of Epidemiology Office of Surveillance and Public Health Preparedness Houston Department of Health and Human Services 8000 N. Stadium Drive, Houston, TX 77054 Tel: 713-794-9181 E-mail:salma.khuwaja@cityofhouston.net Taiwo Fasoranti MD(Team Lead) Bureau of Epidemiology Office of Surveillance and Public Health Preparedness Houston Department of Health and Human Services 8000 N. Stadium Drive, Houston, TX 77054 Tel: 713-794-9181 E-mail:Tai.Fasoranti@cityofhouston.net OR

33. THANK YOU