RESUMO
BACKGROUND: Community engagement in research has gained momentum as an approach to improving research, to helping ensure that community concerns are taken into account, and to informing ethical decision-making when research is conducted in contexts of vulnerability. However, guidelines and scholarship regarding community engagement are arguably unsettled, making it difficult to implement and evaluate. DISCUSSION: We describe normative guidelines on community engagement that have been offered by national and international bodies in the context of HIV-related research, which set the stage for similar work in other health related research. Next, we review the scholarly literature regarding community engagement, outlining the diverse ethical goals ascribed to it. We then discuss practical guidelines that have been issued regarding community engagement. There is a lack of consensus regarding the ethical goals and approaches for community engagement, and an associated lack of indicators and metrics for evaluating success in achieving stated goals. To address these gaps we outline a framework for developing indicators for evaluating the contribution of community engagement to ethical goals in health research. There is a critical need to enhance efforts in evaluating community engagement to ensure that the work on the ground reflects the intentions expressed in the guidelines, and to investigate the contribution of specific community engagement practices for making research responsive to community needs and concerns. Evaluation mechanisms should be built into community engagement practices to guide best practices in community engagement and their replication across diverse health research settings.
Assuntos
Pesquisa Biomédica/ética , Participação da Comunidade , Países em Desenvolvimento , Saúde Global , Objetivos , Infecções por HIV , Características de Residência , Consenso , Ética em Pesquisa , Guias como Assunto , Necessidades e Demandas de Serviços de Saúde , Humanos , Cooperação InternacionalRESUMO
PURPOSE: The Clinical and Translational Science Award (CTSA) program has highlighted community engagement in research by requiring institutions to develop bidirectional relationships with communities to obtain funding. Little is known about how institutions have operationalized that requirement. This study aimed to describe the strategies proposed by the first institutions to receive CTSA funding and to undergo the CTSA renewal process. METHODS: The authors conducted a qualitative document analysis of the community engagement section of 12 original and 10 renewal grant applications of the 12 institutions awarded CTSA funding in 2006 and renewed in 2010. RESULTS: Institutions employed - and research engagement strategies. Capacity-building strategies included education, pilot grants, connecting potential partners, and community research centers. Research engagement strategies ranged from those that allowed for very little input from communities, such as announcements, to those that allowed for a high amount of input from communities, such as community-researcher teams. CONCLUSION: CTSA funding has supported capacity-building for institutions and communities to partner. Engagement strategies employed by the institutions are largely known from prior community-engaged research. Based on the grants from these institutions, the CTSA funding has largely enabled institutions to develop capacity to engage.