The Penn CFAR CAB Welcomes You to the City of Brotherly Love and Sisterly Affection

1. The Penn CFAR CAB Welcomes You to the • City of Brotherly Love and Sisterly Affection

2. The Penn CFAR CAB Welcomes You To The 2nd Cross CFAR CAB Meeting June 10 -11, 2013 Philadelphia, Pennsylvania

3. Case/UHC/MetroHealth ACTU CAB Case Center for AIDS Research University Health Center MetroHealth AIDS Clinical Trials Unit Community Advisory Board

4. CWR U CFAR Mission Statement • To integrate community involvement in HIV/AIDS-related research & clinical trials in order to promote developments in the medical treatment of people living with HIV/AIDS & in preventing further HIV transmission.

5. Describe the makeup of your CAB: • CWRU

6. Case/UHC/MetroHealth ACTU CAB

7. Case/UHC/MetroHealth ACTU CAB: • Network Engagement • ACTG- AIDS Clinical Trials Group • CFAR- Center for AIDS Network • HVTN- HIV Vaccine Trials Network • MTN- Microbicide Trials Network

8. Case/UHC/MetroHealth ACTU CAB: • Community Involvement

9. Chicago CFAR CAB Established, June 2010

10. Chicago D-CFAR CAB Membership

11. Chicago D-CFAR CAB CAB Mission: To foster & maintain partnerships & open communication between community members and CFAR researchers to enhance HIV education, prevention, treatment & research activities reflecting the interest of the community & the investigators. Consumers: Chicago has the 4th highest HIV prevalence of large cities in the US with ~21,000 known infections and another 5,000 presumed infected who are undiagnosed. Those affected are predominantly impoverished minority men, women & adolescents residing in Chicago's inner city neighborhoods where HIV prevalence reaches 400-1,200/100,000. 79% of those infected in Chicago are men, 52% are non Hispanic Black, & 57% are MSM.

12. Chicago D-CFAR National Testing Day

13. DC D-CFAR CAB • George Washington U Mission Statement Mission Statement The DC D-CFAR CAB seeks to provide community perspectives & guidance to the DC D-CFAR & to inform the HIV/AIDS research agenda in Washington, DC.

14. DC D-CFAR CAB • George Washington U • Mission Statement (continued) • More specifically, the CAB seeks to: • Engage the community in collaboration on new HIV/AIDS research efforts; • Ensure community representation on the selection of DC D-CFAR research awards; • Ensure that the community is educated about HIV research activities in DC; • Carry out roles set out by NIH & priorities as established by the CAB; & • Foster partnerships for community research studies.

15. DC D-CFAR CAB • George Washington U Source: http://sphhs.gwu.edu/d-cfar/advisorycomm_boardmap.cfm

16. DC D-CFAR CAB • George Washington U Activities since Cross CAB Meeting Community representation Development of By-laws Review of award applications Participation in Scientific Working Groups Facilitation of Scientific Interest Groups (e.g., women) Community Education IAS poster and “Turning the Tide” presentation Collaboration with DC Community Coalition (DCCC) and DC Government Participation at scientific conferences – IAS, ECHPP

17. DC D-CFAR CAB • George Washington U • Community Education Activities • Development of Town Hall community seminar series with the following objectives: • Increase community knowledge & understanding HIV research • Build community capacity to participate in & advocate for HIV research advocacy • Develop community informed HIV research priorities & agenda. • Planned seminars for upcoming year: • Prevention • Post-CROI • Post-IAS

18. DC D-CFAR CAB • George Washington U Inter-CAB & Community Relations Collaboration with DC Community Coalition Post-conference community updates as a co-sponsor Advising/orienting other prospective CABs

19. DC D-CFAR CAB • George Washington U Future CAB Activities CAB member expansion Planning for reapplication Participation in upcoming meetings – SWG/SIG, SBSRN, ECHPP Continued & expanded collaboration – DCCC, other CABs and community groups Education on trial participant protections & rights Mapping of & connectivity with other CABs Support development of Women & HIV SIG

20. Harvard University • Center for AIDS Research

21. Harvard University CFAR • Description of membership* * Active recruitment to expand & enhance the diversify of the CAB to a 12- 15 member body (e.g. community youth advocate).

22. Harvard University • Center for AIDS Research • Pending Membership Applications • Community Advocate: • A community advocate living with HIV who runs a self-empowerment program for women, & volunteers for a local HIV/AIDS service agency. • Program Director: • The New England AIDS Education and Training Center (NEAETC), established in 1988, is one of eleven Regional Education Centers & 5 National Centers, funded by Health Resources Service Administration (HRSA) with Ryan White Part F dollars & sponsored regionally by Commonwealth Medicine at the University of Massachusetts Medical School. • The New England HIV Education Consortium (NEHEC) is a HRSA Minority AIDS Initiative (MAI) Special Capacity Building funded program serving all 6 states in New England. The primary goal of NEHEC is to address the HIV-related training, educational, & support needs of the full, spectrum of providers as they provide state-of-the-art, quality and compassionate care to individuals living with HIV/AIDS. Innovative training formats address the needs of minority providers, providers serving racial/ethnic/linguistic minorities & communities of color, & those working in settings funded by the Ryan White CARE Act.

23. Harvard University CFAR • Active Recruitment Efforts • Manager of Community Relations/Health Promotion, AIDS Action Committee, Inc. •  AAC’s Mission: To stop the epidemic and related health inequities by eliminating new infections, maximizing healthier outcomes for those infected and at risk, and tackling the root causes of HIV/AIDS. • Youth Linkage to Care Coordinator, Strategic Multisite Initiative for the Identification, Linkage and Engagement in Care of Youth with Undiagnosed HIV Infection (SMILE in Caring for Youth) • Fenway Health/Fenway Institute •  The SMILE Linkage to Care (LTC) Program is designed to provide linkage to medical care and psychosocial support for youth who are newly diagnosed, having difficulties staying engaged in care, or new to the Boston area. This project is for Boston youth ages 12-24. The SMILE program establishes referral relationships with collaborating agencies to identify HIV infected youth and connect these individuals with a Youth Linkage to Care (YLTC) Coordinator. • Mission: The Fenway Institute is an interdisciplinary center for research, training, education, and policy development, focusing on national and international health issues.  Our mission is to ensure access to quality, culturally competent medical and mental health care for traditionally underserved communities, including lesbian, gay, bisexual and transgender (LGBT) people and those affected by HIV/AIDS.

24. Harvard University CFAR • Active Recruitment Efforts #2 Executive Director, Hispanic Black Gay Coalition (HBGC) HBGC’s Mission: Hispanic Black Gay Coalition (HBGC) is one of few non-profit organizations in Boston dedicated to the unique and complex needs of the Black, Hispanic &  Latin@ LGBTQ community. Founded in 2009, we work to inspire & empower Latin@, Hispanic and Black LGBTQ identified individuals to improve their livelihood through activism, education, community outreach, & counseling. Medical Case Manager, Whittier St. Health Center WSHC’s Mission: Our mission is to provide high quality, reliable & accessible primary health care & support services for diverse population to provide wellness & eliminate health and social disparities. In addition: Membership recruitment efforts include seeking local governmental representatives.

25. Harvard University CFAR CAB • Infrastructure • CAB meets bimonthly, or more when additional meetings are required. • Meetings are held in the Boston Metropolitan area. • Does your CAB have a committee structure? • The HU CFAR – CAB is a working board that is broad-based & created from a commitment to involving any & all segments of the community that have an interest in HIV-related research 8 -15 members (core group of 6-10 people) • Two chairs: Chair and Vice- chair • work with HU CFAR staff to set the agenda • seek advice & recommendations from other HU CFAR – CAB • members • Executive Committee • core group of 5 – 6 members • CAB makes decisions by using Robert’s Rules of Order • CAB members will receive a $30.00 stipend to attend meetings • CAB is funded by HU CFAR Executive Committee—Administrative Core

26. Harvard University CFAR CAB • Infrastructure #2 • CAB sponsored community education events: • Forgotten Epidemic: Our Collective Responsibility, Response and Solutions to the AIDS Crisis in Black America Project • Forgotten Epidemic Campaign Study Group • National Survey • National Webinars • National HIV/AIDS Awareness Days • Other Local and national educational HIV programming • In the process of developing a strategic dissemination plan: Community education, outreach and engagement • HU CFAR CAB has been in existence since 2009, whereas CAB members actively participated locally and nationally on HU CFAR – Community Education & Engagement Program’s HIV/AIDS programming (e.g. The Forgotten Epidemic Project, National HIV/AIDS Awareness days, etc). However, our CAB’s Bylaws were only recently ratified. Now that there is a procedural infrastructure in place, HU CFAR CAB will began to grow its membership from 7 current members to 12 (or possibly 15), as well as advance & execute its mission.

27. Community Participatory Advisory Board Baltimore HIV Collaboratory Susan Sherman & David Holtgrave, Co – Directors Jordan White, Program Manager Richard E. Chaisson, MD, PI & Chris Beyrer, MD, MPH, Co-PI

28. JHU CFAR Specific Aims

29. Baltimore HIV Collaboratory

30. Baltimore HIV Collabatory • Objectives • 1. To promote community linkages between JHU researchers with HIV focused NGOs, the BCHD, & people affected with HIV/AIDS through the creation of forums to exchange data, information, & resources. • 2. To identify, recruit, & train under-represented minority undergraduates, graduate students, fellows, & junior faculty in community-based HIV/AIDS research in Baltimore. • 3. To facilitate the development of research skills  among Baltimore-based, HIV focused nonprofit organizations as well as develop and expand research collaborations between JHU, nonprofits, and BCHD.

31. Baltimore HIV Collabatory • Activities • Bridge the Gap Conference – Annual Conference on HIV/AIDS Issues in Baltimore City • Potential Topic – Affordable Care Act Implementation for at People risk or living with HIV • Trainings and Workshops for NGOs and Community Members • Baltimore HIV/AIDS Scholars • 15 underrepresented undergraduate students mentored in a variety of disciplines (epidemiology, chemistry, nursing, bioethics, neurology) • Gilead Project • Community based HCV testing and education program for students and peers

32. Rochester HIV/AIDS CAB • Mission

33. Rochester HIV/AIDS • Community Advisory Board

34. Describe the makeup of your CAB: • Rochester

35. Rochester

36. Rochester

37. Describe the makeup of your CAB: • Rochester

38. Describe the makeup of your CAB: • Rochester

39. UCLA CFAR Community Advisory Board Sung-Jae Lee, Ph.D. University of California, Los Angeles Center for HIV Identification Prevention and Treatment Services (CHIPTS)

40. UCLA CFAR CAB • Members Established in 1997 as part of CHIPTS at UCLA

41. UCLA CFAR CAB • Responsibilities Activities of CFAR/CHIPTS Cores- to ensure that they remain attentive to community concerns, needs, & priorities • Relevance to community of the social/behavioral prevention & intervention research • Efforts to identify opportunities for researchers & staff from racial/ethnic minority groups Impact on the “practice” of activities of CBOs and its overall relationship with the local community

42. UCLA CFAR CAB • Membership • Consists of 10-15 members • At least 25% of the members are people • living with HIV/AIDS. • Knowledge and insight into communities • affected by HIV/AIDS • The term of appointment is 2 years. • Members may serve no more than two • consecutive terms.

43. UCLA CFAR CAB • Meetings • CAB meets quarterly. A yearly meeting schedule • distributed at the start of the year • Agenda prepared by the Executive Director & • transmitted to members in advance of each meeting. • CAB members can propose agenda items a week in • advance of the meeting • Meeting summary is generated after each meeting • A yearly orientation for new CAB members

44. UCLA CFAR CAB • Compensation • CAB members are expected to participate • in all 4 meetings per year • Compensation based on attendance ($400 • annually) • CAB members can submit mileage & • parking reimbursements forms • CAB members provided with a 1099 • statement each year for tax purposes.

45. UCSF Center for AIDS Prevention Studies (CAPS)Community Advisory Board Presenter: Byron Mason

46. UCSF CAPSSpecific Aims • Science to Community: Facilitate access to & use of HIV prevention science by stakeholders • (i.e., community-based organizations, funders & policy makers); • Community to Science: Support CAPS scientists’ use of community expertise; • Foster Collaborative Research: Support community-involved research & ongoing collaborative research partnerships between CAPS scientists & communities.

47. UCSF CAPSMission • Provide input & feedback to CAPS projects, to bring community concerns to CAPS, & to assist CAPS in disseminating research. Provides input to all CAPS investigators, with particular input to the Executive Leadership.

48. UCSF CAPSCommunity Advisory Board • Supported through CAPS’ P30 Grant (NIH) • 17 members (13 active, 4 emeritus) • 4 meetings per year • Peer /Grant Reviews • Members are paid for each meeting • Formal by-laws govern CAB structure & • activities

49. UCSF CAPSActivities & Products • Represent CAPS at scientific & • community meetings (International • AIDS Conference) • CAPS Innovative Dissemination Award • Recommendations for Research • Dissemination (2006, 2013)

50. UCSF CAPSSuccesses & Challenges • Highly “functional” and motivated members • Diversity of disciplines & backgrounds • Close ties to a range of communities • Provider (CBO), consumer, government (local, • state & federal) and corporate inroads • Engagement challenges • General relationship between community & • science • Motivating academics to engage with community