Community-Researcher Partnerships at NIAID HIV/AIDS Clinical Trials Sites: Insights for Evaluation and Enhancement

Abstract

Background Community engagement has been a cornerstone of 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; 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.

Content validation of a quantitative stakeholder engagement measure

“…In future work, the authors intend to conduct construct validation of the measure and to examine its psychometric properties. Given the lack of existing measures for stakeholder engagement in research, we will examine correlative validity with measures of CBPR (Arora et al, ), community‐academic partnerships (Bell‐Elkins, ; Kagan et al, ), community participation in research (Khodyakov et al, ), collaboration (Derose, Beatty, & Jackson, ; Mattessich, Murray‐Close, Monsey, & Amherst H. Wilder Foundation, ), coalition engagement (Peterson, ), and partnership assessment (Center for the Advancement of Collaborative Strategies in Health, ; National Collaborating Center for Methods & Tools, ). After the measure has been comprehensively evaluated and implemented in English, there is the potential for translation to other languages.…”

“…In future work, the authors intend to conduct construct validation of the measure and to examine its psychometric properties. Given the lack of existing measures for stakeholder engagement in research, we will examine correlative validity with measures of CBPR (Arora et al, 2015), community-academic partnerships (Bell-Elkins, 2002;Kagan et al, 2012), community participation in research (Khodyakov et al, 2013), 2008). After the measure has been comprehensively evaluated and implemented in English, there is the potential for translation to other languages.…”

Systematic Review of Quantitative Measures of Stakeholder Engagement

“…We excluded 179 articles at the final coding stage because they ultimately did not meet our eligibility criteria when the full‐length article was coded and discussed. A total of 68 articles contained quantified measures of stakeholder engagement and met our final criteria …”

Addressing diversity and complexity in the community engagement literature: The rationale for a realist review

“…Community engagement (CE) is increasingly recognized as an integral aspect of global health and global development research, building on early efforts by non-governmental organizations and community-based organizations to enhance the impact of their work through participatory and collaborative methods [1][2][3][4][5][6] . Support for CE activities in biomedical research budgets began in 1990 when the National Institute of Allergy and Infectious Diseases (NIAID) began to fund Community Advisory Boards (CAB) for its HIV prevention trials 7 . The Bill & Melinda Gates Foundation and the Wellcome Trust have also supported CE strategies for their investments and research on CE.…”