Medical Monitoring Project (MMP) National Perspective

1. Medical Monitoring Project (MMP)National Perspective A.D. McNaghten, PhD, MHSA Centers for Disease Control and Prevention Division of HIV/AIDS Prevention Clinical Outcomes Team Texas Medical Monitoring Project Meeting – Austin, TX May 31, 2007

2. Objectives • To describe the Medical Monitoring Project (MMP) • To provide an overview of the MMP at the national level • To provide an update of MMP project activities and progress • To discuss how the MMP data will be used • View some preliminary pilot data

3. What is MMP?

4. What is MMP? • New supplemental surveillance project designed to produce nationally representative data on people living with HIV/AIDS who are receiving care in the United States • Collaborative effort with: • State and local health departments • CDC (Centers for Disease Control and Prevention) • NIH (National Institutes of Health) • HRSA (Health Resources and Services Administration)

5. What is HIV Surveillance? • Core Surveillance • Gathers basic information everyone reported with HIV or AIDS • Gender • Age • Race/ethnicity • Mode of HIV exposure • Provides information on the number of cases and trends in the epidemic

6. Estimated Number of AIDS Cases, Deaths, and Persons Living with AIDS,1985-2004, United States 450 90 AIDS 1993 definition implementation 400 Deaths 80 Prevalence 350 70 300 60 250 50 Prevalence (in thousands) No. of cases and deaths (in thousands) 200 40 150 30 20 100 10 50 0 0 1985 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 Year of diagnosis or death Note. Data adjusted for reporting delays.

7. What is HIV Surveillance? • Supplemental Surveillance • Gathers detailed information on fewer people • Access to and receipt of clinical care and support services • Health care seeking and other behaviors • Helps explain the reasons for the trends

8. Questions Supplemental Surveillance Data Can Answer • Are patients receiving care and treatment in accordance with USPHS guidelines? • Are patients receiving care in public facilities receiving the same quality of care as patients in private facilities? • What are the barriers to receiving care and services? • What behaviors are persons who are HIV-infected engaging in?

9. Origin of MMP • Previous supplemental surveillance projects • SHAS (Supplement to HIV/AIDS Surveillance) • ASD (Adult/Adolescent Spectrum of HIV Disease) • Not representative of people in the United States living with HIV/AIDS • Both were conducted in a limited number of areas • Medical Monitoring Project • Interview and medical record data • Representative of HIV-infected people in care

10. Representative Data • Representative = resembles the population • To obtain the most representative data, we would need everyone receiving HIV care in the U.S. to participate • As a compromise, we will give everyone receiving HIV care in the U.S. a chance to participate

11. Three Stage Sampling Design • National sample of project areas • Sample of facilities within each project area 3. Sample of patients within each facility

12. 1st Sampling Stage State level • Every state in the country had a chance of being selected • Chance of selection was proportional to the number of AIDS cases in December 2002 • 20 areas selected • 6 separately funded cities

13. Sampled Project Areas Medical Monitoring Project 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

14. 2nd Sampling Stage Provider level • Every facility providing HIV care in the sampled state had a chance of being selected • ART, CD4, viral load • Large, medium and small facilities/clinics/practices • Public/private; HRSA/non • ~40-60 facilities per project area

15. 3rd Sampling Stage Patient level • Every patient in a sampled facility has a chance of being selected • ≥18 years old • HIV+ • receiving care • ~400 patients per project area

16. Who is involved?

17. Medical Monitoring Project3 stage sample design 26 Project Areas >1,000 Facilities >10,000 Patients

18. Provider Participation Locally Locally, a lead provider assists the health department to • Promote and support the project • Submit articles in local newsletters • Conduct formal and informal talks with providers • Assist the health department with recruitment of providers • Provide advice to the health department One local provider from each project area is a member of CDC’s National Provider Advisory Board (PAB)

19. Provider Participation Nationally • Provider Advisory Board • Provide input on MMP data collection instruments • Provide technical assistance in development of provider education materials and recruitment • Enhance local and national investigators’ understanding of the impact of MMP on the HIV-infected and HIV care provider communities • Guide dissemination of information about MMP within the medical community

20. Community Participation Locally Local community involvement in MMP is required • Many project areas have their own Community Advisory Board or use existing community planning groups/boards • CAB members promote the project and get community and consumer input One local CAB member from each project area is a member of CDC’s National Community Advisory Board (CAB)

21. Community Participation Nationally • Community Advisory Board • Advocate for the best interests of the community and serve as an important link between MMP staff and patients who participate • Provide input on MMP data collection instruments • Provide technical assistance in development of patient education materials and recruitment • Guide the distribution of information about MMP back to the community to help direct prevention and care

22. 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

23. Mark Heinzke Sharon Melville Sylvia Odem Jim Philips Tammy Sajak Jose Velez Laura Armas-Kolostroubis Lead PAB member David Huse Lead CAB member Texas MMP

24. How will the MMP data be used?

25. Data Collection Interview Modules • Demographics • Access to Health Care • Adherence • Sexual Behavior • Drug Use Behavior • Access to Prevention Services

26. Data Collection Chart Abstraction • Demographics • Insurance Status • Opportunistic Illnesses • Antiretroviral Therapy • Laboratory Data • Substance Abuse • Mental Health • Referrals

27. Confidentiality and Security • MMP data adheres to the same rigorous confidentiality and security requirements as other HIV/AIDS surveillance data • Privacy and confidentiality are extremely important and strictly guarded • Names of patients, providers, and clinics are not sent to CDC • Information about individual patients, providers or clinics will not be released or used in any reports • Information can only be accessed by a limited number of staff

28. Uses of MMP Data Local • Ryan White reporting requirements • Epi profiles • Evaluation of local prevention programs • Evaluation of resource needs for treatment and care • Information on access to care and prevention services National • Healthy People 2010 • Documentation of impact of Ryan White CARE Act-supported care • Treatment Guidelines • Evaluation of compliance • Revisions

29. Counseling session about HIV prevention in the preceding 12 months, MMP Pilot*,January 2006 – January 2007 (N=432) *Delaware, South Carolina, Texas, Los Angeles County, Philadelphia, Michigan

30. Counseling session about HIV prevention in the preceding 12 months, by participant’s ethnicity, MMP Pilot*,January 2006 – January 2007 (N=432) Overall 18% Overall 11% * Delaware, South Carolina, Texas, Los Angeles County, Philadelphia, Michigan

31. Prevention Counseling Session in the preceding 12 months, by age in years, MMP Pilot*,January 2006 – January 2007 (N=432) Overall 18% Overall 11% *Delaware, South Carolina, Texas, Los Angeles County, Philadelphia, Michigan

32. Activities and progress

33. Data Collection Cycles • Data collection for MMP is conducted in yearly cycles • Project area activities will take place each data collection cycle • 2005 cycle collected data on patients in care in 2005 • 2005 cycle to end when interviews for the 2007 cycle begin - May 31, 2007

34. Data Collection Cycles • 2007 cycle collects data on patients in care in 2007 • Start interviews after May 1, 2007 • Pending OMB clearance • 2007 cycle will end when data collection for the 2008 cycle begins

35. Delaware Florida Houston Illinois Los Angeles Maryland Michigan New Jersey New York City Philadelphia South Carolina Texas Washington Data Collection Cycles 13 project areas funded to collect data for the 2005 cycle

36. Interviews and Abstractions2005 Data Collection Cycle • Interviews • 10 project areas conducted interviews • DE, HOU, LAC, MD, MI, NJ, PHI, SC, TX, WA • 814 collected • Medical record abstractions • 6 project areas conducted abstraction • HOU, LAC, MI, NJ, TX, WA • 447 collected

37. California Chicago Delaware Florida Georgia Houston Illinois Indiana Los Angeles Maryland Massachusetts Michigan Mississippi Pennsylvania New Jersey New York New York City North Carolina Oregon Philadelphia Puerto Rico San Francisco South Carolina Texas Virginia Washington Data Collection Cycles 26 project areas funded to collect data for the 2007 cycle

38. Progress of 2007 data collection sites (n=26)

39. Medical Monitoring Project (MMP) Centers for Disease Control and Prevention Division of HIV/AIDS Prevention Clinical Outcomes Team (404) 639-6325 aom5@cdc.gov http://www.cdc.gov/hiv/topics/treatment/MMP/index.htm

40. MMP National Surveillance Report Centers for Disease Control and Prevention Division of HIV/AIDS Prevention Clinical Outcomes Team

41. Informative & Relevant • Consumers • Capture the experiences of those in care • Describe met and unmet needs • Clinicians • Paint a broader (representative) picture of HIV progression, comorbidities, disease management, and care • Demonstrate the quality of care delivered • Help advocate for treatment guidelines • Community Planning Groups • Demonstrate gaps in services • Help to allocate services/resources locally • Used to guide local prevention programs • Health policy and public health professionals • Used to forecast resource needs and guide allocation • Inform development of new prevention initiatives

42. Suggestions for the National Surveillance Report? Sylvia Odem sylvia.odem@dshs.state.tx.us (512) 533-3053