Looking Back to Look Forward: A Short History and Future Plans for the UNC CFAR and its Community Advisory Board
-MARK YOUR CALENDARS!!December 1, 2011 is WorldAIDS Day! The theme this yearis “Getting to Zero”: Zero NewHIV Infections, Zero Discrimi-nation, and Zero AIDS RelatedDeaths. The UNC CFARCODE Office is hosting a spe-cial outdoor yoga and aware-ness event on UNC Campus atthe Pit from 2:30 to 3:30 pm onthis date. More details to comesoon! For general informationon World AIDS Day, visit:www.worldaidscampaign.org/-For more information on Julian’s Heart to HAARTproject and a film trailer, visit:http://www.dosomething.org/project/heart-haart-state-hivaids-movement-The AIDS 2012: XIXInternational AIDS Conferenceis coming to the United States!The conference will be heldfrom 22 to 27 July 2012 inWashington, DC. Now is thetime to start working onabstracts and booking hotels!For more information, visit:http://www.aids2012.org/
The mission of the CFAR is toprovide a multidisciplinaryenvironment that promotesbasic, clinical, behavioral andtranslational research in theprevention, detection andtreatment of HIV infection.
October 25, 2011
3. Issue 4
University of North Carolina at Chapel Hill
This past month, the Community Advisory Board(CAB) for our UNC Center for AIDS Research(CFAR) convened for their quarterly meeting. Dr. RonStrauss, CODE Office Director, Executive ViceProvost of UNC-Chapel Hill, meeting facilitator andone of the CAB founders, has been organizing thesemeetings since 1998. Strauss told the CAB the story of the creation of the CFAR and the origins of its CAB.Before the CFAR was even created, communitymembers asked UNC to develop a research center tostudy HIV/AIDS. In order to successfully create such aresearch center to investigate relevant biomedical andsocial topics associated with HIV/AIDS, an organizedcommunity voice was needed. The CFAR CommunityAdvisory Board was created as just such a forum forperspectives from the North Carolina community andit included researchers, students, activists, and peopleliving with and affected by HIV/AIDS. At that time,Project LinCS was underway in the community andthey were examining how to best link scientists andcommunities around issues of HIV/AIDS. Strauss andhis fellow researchers had published newspapersupplements about their research results in localnewspapers, made presentations on television, and onradio, and were seeking to communicate about AIDSresearch in jargon-free ways so that the communitycould be fully involved and engaged. Years later, theCAB continues to meet several times a year to assessthe constantly changing needs of the community andensure that research is being conducted in a way thatis conducive to not only studying, but helping andcontributing to the community.At the fall 2011 CAB meeting, Dr. Strauss said tothe members of the CAB, “Does this CAB meet yourneeds? If not, let’s change it!” This attitude of respectfor community members and their needs is one of themain reasons that the UNC CFAR has been sosuccessful at bridging to communities. It was explainedthat “this CAB blends community participants,stakeholders, and researchers in a unique way”; thisstands in stark contrast to other CABs which are oftencreated for the purpose of advising one specific study(as opposed to a whole community and researchcenter). A lively discussion ensued that highlighted thehigh esteem that individual CAB members fromdifferent walks of life hold for the board and theCFAR. CAB members told of their experiences as pastresearch subjects, and brainstormed about how betterto empower subjects in AIDS-related projects.Sharon Parker, a UNC Social Work doctoralstudent andmember of theCAB for severalyears,commented thatbeing a part of the board “letsme think moreabout the ethicsof my ownresearch” on adaily basis.Parker made thoughtful suggestions about how to moreeffectively engage the community in current researchprojects. She proposed scheduling events for communityinput
a research project is begun and to moreconsistently provide community members and researchparticipants with incentives and updates on the results of studies in which they themselves and their fellow neighborsparticipated. Parker stated, “My research is a voice for thepeople I represent”, and the CAB was in completeagreement with her sentiment. In response, CAB memberRandy Rogers informed the CAB of a research literacycurriculum currently being prepared for piloting by the LinCs2 Durham project, which will serve to educate individuals onhow to interpret and understand the research studies beingconducted in their communities.Rogers explained that problems often start at theinitiation stage of a research project; conversely, if community members are included and educated from thestart, the results are beneficial for all. Rogers said that “inorder to effectively force strong ties in the community, a lotof research and ethnography is needed”. Additionally, Rogersencouraged CAB members to “do the unconventional” inthe communities of interest, such as working in a localclothing closet or thrift store and attending community fairsand events in order to become a familiar face as a researchrepresentative.One HIV-positive CAB member shared, “With my ownstatus comes a responsibility to contribute something to theworld of research”. He shared his experiences as aparticipant in Project SafeTalk at the UNC CFAR severalyears ago, and in a very heartfelt exchange, the CAB realizedthat one of the researchers involved in that very study wasat the table now as a CAB participant. Virginia Thomas, CABmember and UNC student, explained that hearing thecommunity voices at CAB meetings helps her to “break down the power dynamics of research” and allows her to“stay congruent with an ethics of moral justice” while work-ing to pursue her career as an HIV/AIDS social researcher.
UNC CFAR Website:http://cfar.med.unc.edu/
Ronald Swanstrom PI -email@example.com
CFAR CommunityOutreach and Education(CODEOffice) Contacts: Dr. Ron Strauss(firstname.lastname@example.org) & VanessaWhite (VMWhite@email.unc.edu)
Newsletter written/compiled byDanielle Strauss
Disponible en Español:contactaVMWhite@email.unc.edu
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Continued on Page 2CAB members network and collaborateat the fall meeting