Community-researcher partnerships at NIAID HIV/AIDS clinical trials sites: insights for evaluation and enhancement

Abstract

Background: Community engagement has been a cornerstone of National Institute of Allergy and Infectious Diseases (NIAID)'s HIV/AIDS clinical trials programs since 1990. Stakeholders now consider this critical to success, hence the impetus to develop evaluation approaches.

Objectives: The purpose was to assess the extent to which community advisory boards (CABs) at HIV/AIDS trials sites are being integrated into research activities.

Methods: CABs and research staff (RS) at NIAID research sites were surveyed for how each viewed (a) the frequency of activities indicative of community involvement, (b) the means for identifying, prioritizing, and supporting CAB needs, and (c) mission and operational challenges.

Results: Overall, CABs and RS share similar views about the frequency of community involvement activities. Cluster analysis reveals three groups of sites based on activity frequency ratings, including a group notable for CAB-RS discordance.

Conclusions: Assessing differences between community and researcher perceptions about the frequency of and challenges posed by specific engagement activities may prove useful in developing evaluation tools for assessing community engagement in collaborative research settings.

Figure 1

Community Involvement activities. Marginal mean frequency ratings, by CAB and RS. Dotted lines represent the pooled mean ratings for all activities in the set. Rating Scale: 1=Never; 7=Always. Abbreviations: CAB = Community Advisory Boards; RS = Research Staff. * For each pair, activity rating significantly different than the pooled mean at p < .01.

Figure 2

Relevance of Research activities. Marginal mean frequency ratings, by CAB and RS. Dotted lines represent the pooled mean ratings for all activities in the set. Rating Scale: 1=Never; 7=Always. Abbreviations: CAB = Community Advisory Boards; RS = Research Staff. * For each pair, activity rating significantly different than the pooled mean at p < .01.

Figure 3

Communication and Collaboration activities. Marginal mean frequency ratings, by CAB and RS. Dotted lines represent the pooled mean ratings for all activities in the set. Rating Scale: 1=Never; 7=Always. Abbreviations: CAB = Community Advisory Boards; RS = Research Staff. * For each pair, activity rating significantly different than the pooled mean at p < .01.

Figure 4

Site clusters: Mean frequency ratings, by CAB and RS, by site cluster (High, Mixed, Low). Data represent the mean rating for all activities within each of three sets: Community Involvement; Relevance of Research; Communication and Collaboration. Rating Scale: 1=Never; 7=Always. Abbreviations: CAB = Community Advisory Boards; RS = Research Staff.