Making Sure Research Is Used: Community-Generated Recommendations for Disseminating Research

Fernández-Peña, José Ramón; Moore, Lisa; Goldstein, Ellen; DeCarlo, P; Grinstead, Olga; Hunt, Carolyn; Bao, Daniel; Wilson, Hank

doi:10.1353/cpr.0.0013

Cited by 17 publications

(15 citation statements)

References 3 publications

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“…However, the CBPR dissemination literature primarily emphasizes passive, unidirectional dissemination strategies (eg, press releases, policy briefs, newsletters, websites). Apart from brief allusions to workshops with community members (3,18,19), scant literature examines how to implement community dissemination as a two-way dialogue or address its challenges, which may include translating research terminology into lay language (20), and — when findings focus on historically marginalized communities — how to discuss research in ways that are sensitive to mistrust and concerns about being stigmatized (21–23). …”

Section: Introductionmentioning

confidence: 99%

Dissemination as Dialogue: Building Trust and Sharing Research Findings Through Community Engagement

et al. 2016

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A fundamental feature of community-based participatory research (CBPR) is sharing findings with community members and engaging community partners in the dissemination process. To be truly collaborative, dissemination should involve community members in a two-way dialogue about new research findings. Yet little literature describes how to engage communities in dialogue about research findings, especially with historically marginalized communities where mistrust of researchers may exist because of past or present social injustices. Through a series of interactive community presentations on findings from a longitudinal study, we developed a process for community dissemination that involved several overlapping phases: planning, outreach, content development, interactive presentations, and follow-up. Through this process, we built on existing and new community relationships. Following each interactive presentation, the research team debriefed and reviewed notes to identify lessons learned from the process. Key themes included the importance of creating a flexible dissemination plan, tailoring presentations to each community group, establishing a point person to serve as a community liaison, and continuing dialogue with community members after the presentations. Core strategies for developing trust during dissemination included engaging community members at every step, reserving ample time for discussion during presentations, building rapport by sharing personal experiences, being receptive to and learning from criticism, and implementing input from community members. This process led to a deeper understanding of research findings and ensured that results reached community members who were invested in them.

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Section: Introductionmentioning

confidence: 99%

Dissemination as Dialogue: Building Trust and Sharing Research Findings Through Community Engagement

et al. 2016

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“…CABs serve several functions, depending on the project mission and requirements. They provide input into research agendas; serve as gatekeepers for researcher entry into communities; formally approve projects; and influence the design, conduct, and implementation of studies (Fernandez-Pena et al, 2008;Silvestre, Quinn, & Rinaldo, 2010;Strauss et al, 2001).…”

mentioning

confidence: 99%

A Case Study of Engaging Hard‐to‐Reach Participants in the Research Process: Community Advisors on Research Design and Strategies (CARDS)®

Kaiser

Bowers

2016

Research in Nursing & Health

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Lack of diversity among study participants in clinical research limits progress in eliminating health disparities. The engagement of lay stakeholders, such as patient or community advisory boards (CABs), has the potential to increase recruitment and retention of underrepresented groups by providing a structure for gathering feedback on research plans and materials from this target population. However, many CABs intentionally recruit prominent stakeholders who are connected to or comfortable with research and academia and thus may not accurately represent the perspectives of underrepresented groups who have been labeled hard-to-reach, including racial minorities and low-income or low-literacy populations. We developed a partnership between the University of Wisconsin-Madison School of Nursing and two community centers to deliberately engage hard-to-reach people in two lay advisory groups, the Community Advisors on Research Design and Strategies (CARDS)®. Community center staff recruited the CARDS® from center programs, including parenting and childcare programs, women’s support groups, food pantries, and senior meal programs. The CARDS® model differs from other CABs in its participants, processes, and outcomes. Since 2010, the CARDS® have met monthly with nurses and other researchers, helping them understand how research processes and the language, tone, appearance, and organization of research materials can discourage people from enrolling in clinical studies. We have successfully used the CARDS® model to bring hard-to-reach populations into the research process and have sustained their participation. The model represents a promising strategy for increasing the diversity of participants in clinical research.

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“…Community partnerships can play a vital role in knowledge dissemination for policy making and implementation (39, 40). These and subsequent efforts to improve evaluation will be a key component in the effectiveness of these partnerships.…”

Section: Discussionmentioning

confidence: 99%

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

Kagan¹,

Rosas²,

Siskind³

et al. 2012

cpr

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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.

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Making Sure Research Is Used: Community-Generated Recommendations for Disseminating Research

Cited by 17 publications

References 3 publications

Dissemination as Dialogue: Building Trust and Sharing Research Findings Through Community Engagement

Dissemination as Dialogue: Building Trust and Sharing Research Findings Through Community Engagement

A Case Study of Engaging Hard‐to‐Reach Participants in the Research Process: Community Advisors on Research Design and Strategies (CARDS)®

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

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