COMMUNITY ADVISORY BOARD
NOTHING ABOUT US, WITHOUT US
WHO WE ARE
"in a nutshell"
Social Justice – inclusion, access, equity
Messaging -- Being intentional and attentive to language impact regarding cure research
Aligning researchers and community members to achieve research success
Developing science/research literacy, skills and personal growth among CAB members
Creating a diverse CAB that ensures that input from people living with HIV is accounted for in all CAB decisions
Membership is open to all who are interested in HIV cure research and willing to make a commitment to regular meeting attendance and assisting with CAB activities
Must sign confidentiality and conflict of statements and attend 3 meetings prior to joining
Asked to commit to at least 1 year
WHAT IS A CAB?
A community advisory board, or CAB, is a group of representatives from the communities of people living with HIV or affected by HIV that meet with our scientists and researchers in order to promote communication that goes both ways.
CABs are designed to represent the interests of diverse communities impacted by HIV and give local populations a voice in the research.
They help ensure that the research agenda and specific studies reflect the needs of people with HIV, and also help protect the interests of study participants.
CABs can help researchers create socially and culturally appropriate messaging strategies to relay the results of their work and can assist in the dissemination of these results into the community.
OUR CAB COORDINATOR
Led by our Community Engagement Project Manager (CEPM), Mr. Michael Louella, the CAB has established a mutually productive presence within all aspects of defeatHIV research and clinical efforts.
This has included:
1) integration of the CAB into the Executive Committee and standing & impromptu scientific meetings;
2) collaboration on clinical protocol development and informed consent forms;
3) catalyzing social science research;
4) advising on recruitment and communications; and
5) partnership on planning and participation of HIV cure conferences and community educational events.
Michael serves as the liaison between the CAB and the scientific and administrative cores of the defeatHIV collaboratory.
OUR CAB'S MISSION
To serve as a communication link and mobilize HIV cure researchers, their institutions and our communities to work together to cure HIV
We will achieve our mission by:
1. Ensuring that input from people living with HIV is accounted for in all defeatHIV CAB decisions;
2. Providing feedback on ethical and practical concerns, as well as, gaps in the defeatHIV collaboratory research plan and providing suggestions for and input concerning future defeatHIV research projects;
3. Providing input on outreach efforts to clinical components of the defeatHIV collaboratory;
4. Educating the HIV-positive, cure-research activist, and general communities about the research activities and results of the defeatHIV collaboratory’ s research;
5. Providing feedback and assistance to the defeatHIV leadership to help overcome obstacles that impede moving research forward both quickly and ethically;
6. Providing input to and feedback on defeatHIV communication plans and tools to defeatHIV and other stakeholders (e.g., CBOs, faith communities, media and funders); and
7. Assisting the defeatHIV scientific and administrative cores in advocating for additional resources and attention to defeatHIV related issues in cure research.
MEMBERSHIP & ROLES
Any community member who has a strong interest in HIV cure research, and access to email is welcome to join the CAB. The defeatHIV CAB shall strive to have a minimum of ten (10) members and is invested in having the fullest participation possible from people living with HIV.
Each member must sign and have on file a Confidentiality Agreement.
Each member must annually sign and have on file a Conflict of Interest Statement.
MDC CAB REPRESENTATIVES
Two members of the defeatHIV CAB shall be selected to serve as members of the National MDC CAB. National CAB Reps are selected bi-annually in staggered terms by consensus of those present.
National CAB members may be reselected if they so desire and the CAB votes for their continuation.
It is the CAB’s preference, when possible, that one of the National CAB Representatives be HIV-positive.
If it is deemed desirable by the CAB to have working groups to deal with specific issues or to advise defeatHIV projects, each working group shall have the power and responsibility delegated to it by the CAB and shall report as appropriate to the full CAB.
Each working group must have at least one CAB member and may include non-CAB community members.
Each working group shall choose a chair or co-chairs, one of whom must be a CAB member. The chair shall be primarily responsible for communication between the CAB and/or defeatHIV.
ADDING NEW MEMBERS
New members may join the CAB at any time. The process for adding new voting members to the CAB shall be as follows:
The interested party shall attend 3 CAB meetings (in person or by phone). At the beginning of the first meeting attended, the interested person must sign the confidentiality agreement and a disclosure of conflict of interest prior to sitting in on any CAB meetings.
After attending three meetings, the person will be asked to become a member of the CAB. Becoming a member means agreeing to the term of commitment and participation listed below.
Community members may attend CAB meetings without becoming members of the CAB, but still must sign the confidentiality agreement and a disclosure of conflict of interest forms.
COMMITMENT & PARTICIPATION
Members are expected to participate for at least one year, however, membership is voluntary, and members may resign at any time.
Each member is expected to take part in at least eight monthly CAB meetings during the year and to respond in a timely fashion to email requests for information and comment to remain members of the CAB.
Each member is also expected to support and participate in defeatHIV events as best they can.