Community Advisory Boards in HIV Research

Delaney, Eileen; Walton, Heather M.; Trezza, Glenn R.; Henley, Karen; Vielhauer, Melanie J.; Morgan, Erin E.; Meyer, Phil; Keane, Terence M.

doi:10.1097/qai.0b013e31824acdfb

Cited by 8 publications

(8 citation statements)

References 16 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…In actuality, the extent of community members’ involvement in CBPR is often limited; for example, involving community members only to help recruit study participants [ 5 , 6 ]. Community advisory boards (CABs) — boards comprised of members of a community who collaborate with academic researchers on research endeavors — have been proposed as a solution to achieve a more equitable, effective, and engaged academic-community partnership [ 7 , 8 ]. The field of HIV/AIDS research has long involved CABs, in part because community activists worked with the National Institute of Allergy and Infectious Disease (NIAID) to establish a 1990 mandate that all NIAID-funded research establish CABs [ 7 , 9 , 10 ].…”

Section: Introductionmentioning

confidence: 99%

“…Community advisory boards (CABs) — boards comprised of members of a community who collaborate with academic researchers on research endeavors — have been proposed as a solution to achieve a more equitable, effective, and engaged academic-community partnership [ 7 , 8 ]. The field of HIV/AIDS research has long involved CABs, in part because community activists worked with the National Institute of Allergy and Infectious Disease (NIAID) to establish a 1990 mandate that all NIAID-funded research establish CABs [ 7 , 9 , 10 ]. Since the NIAID mandate, several studies have examined how CABs can be used to support ideal CBPR in HIV/AIDS research [ 5 , 7 , 11 ].…”

Section: Introductionmentioning

confidence: 99%

“…The field of HIV/AIDS research has long involved CABs, in part because community activists worked with the National Institute of Allergy and Infectious Disease (NIAID) to establish a 1990 mandate that all NIAID-funded research establish CABs [ 7 , 9 , 10 ]. Since the NIAID mandate, several studies have examined how CABs can be used to support ideal CBPR in HIV/AIDS research [ 5 , 7 , 11 ].…”

Section: Introductionmentioning

confidence: 99%

“…The limited research on HIV/AIDS CABs in the United States has focused mainly on the procedural function of these groups, examining which elements have helped or hindered the establishment of a successful CAB. Previous studies include explorations of CAB structures that have led to successful community partnerships [ 1 , 11 ], case studies of exemplary CABs in different environments including those paired with academic centers [ 7 , 12 , 13 ], and surveys of CAB members and/or researchers to understand their attitudes and beliefs towards participating in a CAB [ 9 , 10 ]. Findings from these studies indicate that successful CABs operate on transparency and equal participation from researchers and community members [ 12 , 14 ] and set terms of engagement prior to the initiation of the partnership [ 1 , 15 ].…”

Section: Introductionmentioning

confidence: 99%

“…Apart from this focus on the functioning of HIV/AIDS CABs, there remains more to be learned about the nature of CABs as a tool to further participatory research in the field of HIV, particularly among minority communities [ 7 , 24 ]. To our knowledge, previous studies have not conducted in-depth qualitative analyses of an urban HIV-focused CAB comprised of community members who work with an underserved population of racial and ethnic minorities.…”

Section: Introductionmentioning

confidence: 99%

See 4 more Smart Citations

“A place at the table:” a qualitative analysis of community board members’ experiences with academic HIV/AIDS research

Safo

Cunningham

Beckman

et al. 2016

BMC Med Res Methodol

View full text Add to dashboard Cite

BackgroundCommunity advisory boards (CAB) are proposed as one mechanism to carry out successful community based participatory research (CBPR), but the presence of CABs may be insufficient to optimize academic-community partnerships.MethodsWe conducted semi-structured interviews with minority members of a CAB partnered with a HIV/AIDS research center and identified three themes.ResultsFirst, lack of trust in researchers included two subthemes: researchers’ lacked respect for community-based organizations’ (CBO’s) interests and paid inadequate attention to building trust. Second, power imbalance included three subthemes: CAB members felt like inferior “token” members, felt that a lack of communication led to disempowerment, and held preconceived beliefs of researchers that led to perceived power imbalance. Third, CAB members suggested best practices, including using collaborations to build trust, actively allocating power, and sharing tangible research benefits with CBOs.ConclusionsOur findings indicate that CABs must be founded on trust and instilled with power to meet the tenets of CBPR.

show abstract

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

“A place at the table:” a qualitative analysis of community board members’ experiences with academic HIV/AIDS research

Safo

Cunningham

Beckman

et al. 2016

BMC Med Res Methodol

View full text Add to dashboard Cite

show abstract

Within and beyond the communal turn to informed consent in industry-sponsored pharmacogenetics research: merits and challenges of community advisory boards

Soofi

Leeuwen²

2016

J Community Genet

View full text Add to dashboard Cite

The one-size-fits-all paradigm of drug development fails to address inter-individual variability in drug response. Pharmacogenetics research aims at studying the role of genotypic differences in drug response. Recently, the pharmaceutical industry has shown interest to embed pharmacogenetics studies in the process of drug development. Nevertheless, population-based and commercial aspects of such futureoriented studies pose challenges for individually based informed consent (IC). As an exemplar of the communal turn to IC procedures, community advisory boards (CABs) have been integrated into different types of medical research. CABs hold the promise of organizing the relationship between participants and researchers in a more reciprocal and participatory way, offering possible means of overcoming the lapses of individualistic IC. However, the involvement of CABs with pharmacogenetics research might be rife with difficulties, uncertainties, and challenges. The current study first reviews the existing literature to discuss added values and challenges of relying on CABs as a supplement to individually based IC. Then, the particular moral and regulatory landscape of pharmacogenetics research will be delineated to argue that community engagement is both necessary and promising beyond the communal turn to IC processes. Three main features of the landscape include (1) new supportive stances that some regulatory bodies have adopted toward pharmacogenetics research, (2) the motivation of the industry to draw reception and trust from the subpopulations, and (3) the important role of the society in generating and embedding pharmacogenetics knowledge. Finally, some points to consider will be discussed to contextualize relying on CABs within this landscape.

show abstract

Community advisory boards: Experiences and common practices of clinical and translational science award programs

Stewart

Boateng

Joosten

et al. 2019

J. Clin. Trans. Sci.

View full text Add to dashboard Cite

Community advisory boards (CABs) are a valuable strategy for engaging and partnering with communities in research. Eighty-nine percent of Clinical and Translational Science Awardees (CTSA) responding to a 2011 survey reported having a CAB. CTSAs’ experiences with CABs are valuable for informing future practice. This study was conducted to describe common CAB implementation practices among CTSAs; document perceived benefits, challenges, and contributions; and examine their progress toward desirable outcomes. A cross-CTSA collaborative team collected survey data from respondents representing academic and/or community members affiliated with CTSAs with CABs. Data representing 44 CTSAs with CABs were analyzed using descriptive statistics. A majority of respondents reported practices reflecting respect for CAB members’ expertise and input such as compensation (75%), advisory purview beyond their CTSA’s Community Engagement program (88%), and influence over CAB operations. Three-quarters provide members with orientation and training on roles and responsibilities and 89% reported evaluating their CAB. Almost all respondents indicated their CTSA incorporates the feedback of their CABs to some degree; over half do so a lot or completely. This study profiles practices that inform CTSAs implementing a CAB and provide an evaluative benchmark for those with existing CABs.

show abstract

Community Advisory Boards in HIV Research

Cited by 8 publications

References 16 publications

“A place at the table:” a qualitative analysis of community board members’ experiences with academic HIV/AIDS research

“A place at the table:” a qualitative analysis of community board members’ experiences with academic HIV/AIDS research

Within and beyond the communal turn to informed consent in industry-sponsored pharmacogenetics research: merits and challenges of community advisory boards

Community advisory boards: Experiences and common practices of clinical and translational science award programs

Contact Info

Product

Resources

About