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In Memory of Keith Cylar 1958-2004

The ACT2 Project: Using Motivational Interviewing and a Structural Analysis of Racism to Increase Access to ACTs for People of Color, including Women. Marion Riedel, PhD, LCSW-R Columbia University School of Social Work mr108@columbia.edu

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In Memory of Keith Cylar 1958-2004

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  1. The ACT2 Project: Using Motivational Interviewing and a Structural Analysis of Racism to Increase Access to ACTs for People of Color, including Women Marion Riedel, PhD, LCSW-R Columbia University School of Social Work mr108@columbia.edu Marya Gwadz, Ph.D. Noelle Leonard, Ph.D and the ACT2 Project Collaborative Research Team HRC Conference 2010 Supported by the National Institutes of Health (AI070005, 1U014637) and the Center for Drug Use and HIV Research (P30 DA011041) at the National Development and Research Institutes, Inc. (NDRI)

  2. In Memory of Keith Cylar1958-2004

  3. Background People of color (compared to whites) are Over-represented among incident & prevalent HIV/AIDS cases Have higher AIDS-related mortality rates Have more symptoms, and……………. Under-represented in clinical trials Inter-disciplinary approach Behavioral scientists (NDRI) AIDS clinical trials investigators (BIMC) Community-based and AIDS service organizations

  4. AIDS Clinical Trials (ACT) Disparities Mainly African-American PLHA

  5. Racial/ethnic disparities Rooted in U.S. history Rooted in social and institutional structures Carried on through culture and norms

  6. Minimizing ACT disparities Research Generalizability of research findings May improve treatment efficacy over long-term Individual PLHA, ACTs provide access to Potential improvements in Health Mental health Quality of life Well-being “Trials effect” Increased knowledge (HIV/AIDS, treatments) High level of attention and care Chance to contribute to science & community Ethics Reduces long-standing barriers between medical research and communities of color

  7. ACT Endpoints PRIMARY ACT SCREENING Eligible NO YES Stay in touch Decide NO YES SECONDARY ENROLL Stay in touch

  8. Why target screening as primary endpoint? Base rates very low in population Potential risks are very low Potential benefits Knowledge Allays concerns and fears Altruistic Builds relationships between PLHA and CTU Provides vital information to stakeholders Gateway to enrollment Yet not easy to solve…

  9. The ACT1 Project Exploratory Brief intervention with PLHA 2 groups 1 short phone contact Pre-test, post-test design Multi-level qualitative research PLHA Case managers Medical providers Clinical trials staff

  10. KNOWLEDGE ATTITUDES Beliefs, Fears Mistrust MOTIVATION Willingness Readiness SOCIAL CONTEXT Peers Health care providers SKILLS Problem Solving Decisional Balance BACKGROUND Age Gender Socioeconomic Status Race/ethnicity Children CONTEXUTAL INFLUENCES Living Situation Health Status Social Support Substance Use INTERVENTION OUTCOME Screening for ACTs BACKGROUND FACTORS CHANGE MECHANISMS ACTION STATE Intervention core elements

  11. ACT1: The “Leaky Pipe” Total sample N = 580 Lost at each step Attended intervention 93%, n=539 41 (7%) did not attend intervention Made screening appt 47%, n=272 267 (46%) attended intervention but no screening appt Attended screening appt 25%, n=143 129 (22%) made appt but did not attend 48 (8%) attended but did not complete screening Completed screening 16%, n=95 Eligible 2%, n=10 Enrolled 1%, n=6

  12. Experiences of screening PLHA generally had positive experiences “The people there were very nice, comfortable, respectable… Made you feel comfortable, you can trust in them. That's basically what you really want, especially doing the studies that's something like what I'm gonna be doing.” Reactions to ineligibility included Mild to moderate disappointment Relief Optimism for future Appreciated access to ACT system

  13. Barriers to ACTs: Integrated qualitative & quantitative findings History, mistreatment, distrust, willingness, service use patterns Individual Social Network Organizations & providers (health care, social service) Clinical trials units Clinical trials inclusion/exclusion criteria

  14. Barriers to ACTs: Integrated qualitative & quantitative findings History, mistreatment, distrust, willingness, service use patterns Individual Negative norms, distrust Social Network Organizations & providers (health care, social service) Clinical trials units Clinical trials inclusion/exclusion criteria

  15. Barriers to ACTs: Integrated qualitative & quantitative findings History, mistreatment, distrust, willingness, service use patterns Individual Negative norms, distrust Social Network Low #s referrals, relationships Organizations & providers (health care, social service) Clinical trials units Clinical trials inclusion/exclusion criteria

  16. Barriers to ACTs: Integrated qualitative & quantitative findings History, mistreatment, distrust, willingness, service use patterns Individual Negative norms, distrust Social Network Low #s referrals, relationships Organizations & providers (health care, social service) Ineffective outreach, unfamiliar setting Clinical trials units Clinical trials inclusion/exclusion criteria

  17. Barriers to ACTs: Integrated qualitative & quantitative findings History, mistreatment, distrust, willingness, service use patterns Individual Negative norms, distrust Social Network Low #s referrals, relationships Organizations & providers (health care, social service) Ineffective outreach, unfamiliar setting Clinical trials units Mismatch Clinical trials inclusion/exclusion criteria

  18. Planning ACT2 Address impact of structural racism more directly Address “leaks” in pipe from ACT1 Increase intensity & duration, but efficiently Reduce complexity of content PLHA did not understand screening PLHA did not separate screening & enrollment Better explain mechanisms of action Enhance theoretical model Individual, attitudinal, social/structural Theory of Triadic Influence Theories of behavior change Theory of Normative Regulation (norms) Social Cognitive Theory (knowledge, attitudes, skills) Motivational Interviewing (motivation)

  19. Key Intervention Characteristics Peer-driven intervention 6 hours total Interactive exercises not boring, not too didactic Videotaped presentations Peers involved in ACTs Repetition of core messages Brief individual session on clinical trials unit Liaison through screening process

  20. Primary targets of ACT2 Direct Individual Social Network Direct Organizations& providers (health care, social service) Indirect Clinical trials units Indirect Clinical trials inclusion criteria Long-term

  21. Sample intervention core elements:Increase awareness & understanding Types and purposes of ACTs Historical and current barriers The impact of structural racism Historical maltreatment by medical research Protections for research participants Health care provider relationship Contextualize and normalize ACTs People of color are wanted & needed--DISCUSS

  22. Sample intervention core elements: Build motivation Highlight and explore ambivalence Fear and distrust versus willingness Racism/sexism versus opportunity Past maltreatment versus protections Unfamiliarity versus access Negative norms versus altruism Personal and community stasis versus change Reduce ambivalence (decisional balance) Increase motivation (willingness, importance)

  23. ACT2 PDI research design (RCT) CONTROL INTERVENTION Recruited by peer Recrt/Educ by peer Screen & Baseline Screen & Baseline Health educ groups & referral to ACTs ACT2 intervention groups Peer Peer Peer Peer Peer Peer Session 4

  24. ACT2 demographic characteristics

  25. ACT2 preliminary screening efficacy(N=382 who completed intervention) (%) 25

  26. Preliminary: ACT2 compared to ACT1 (%) 26

  27. Preliminary: ACT2 compared to ACT1 (%) N=54 lost 27

  28. PRELIMINARY - Enrollment (of those completed screening ACT2 arm, N=233; %) N=41 N=35 N=4 N=23 28

  29. Secondary outcome: Enrollment in therapeutic trials Crucial to ACT2 and to addressing this disparity PLHA are screened/enrolled first at Beth Israel Medical Center Try to match to ACTs at other clinical trials units in NYC 12 month “matching” period Observational and therapeutic studies Barriers to enrollment First have to match to trials Then usually get provider input and support Then there are visits, procedures, labs, consent forms, etc Life is complicated Fears persist Takes 3-5 months to enroll Treatment experienced are harder to match

  30. “Active” components of ACT2 Peer recruitment and education Unpack screening and enrollment Frank discussion of barriers and fears Racism, classism, sexism Motivational approach (no pressure) Structural components Where sessions take place Navigation But not cognitive-behavioral type skills (problem solving)

  31. Fit between approach and problem Motivational approach fits We have a stance (access to trials is good) but Don’t argue that things are resolved Don’t say we know what’s best for people No pressure Don’t raise resistance Allow for “no way in hell” response “I will never be a white man’s guinea pig”

  32. Conclusions ACT2 approach very promising Elements of ACT2 can be applied to HIV/AIDS treatment barriers Cancer treatment barriers Cancer clinical trials Other levels of intervention planned Social service providers Health care providers HIV clinics & Designated AIDS centers AIDS clinical trials units Trials need to change—This is key!! Less strict inclusion criteria Develop trials for POC and women

  33. ACT2 Collaborative Research Team

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