Across the Miles: Process and Impacts of Collaboration with a Rural Community Advisory Board in HIV Research

Isler, Malika D Roman; Miles, Margaret Shandor; Banks, Bahby; Perreras, Lexie; Muhammad, Melvin; Parker, Donald; Corbie-Smith, Giselle

doi:10.1353/cpr.2015.0014

Cited by 19 publications

(12 citation statements)

References 27 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…In contrast to this targeted approach in defining stakeholders, members of the general public were engaged in just 12 studies (11.1%). Thirteen studies (12%) described engagement conducted with community stakeholders or community representatives without specifying further as to what aspect of the community these stakeholders represent [29,30,56,59,70,92,98,108,112,120,122,125,128].…”

Section: Types Of Stakeholders Engaged For Hiv Clinical Trial Researchmentioning

confidence: 99%

Stakeholder engagement to inform HIV clinical trials: a systematic review of the evidence

Day

Blumberg

et al. 2018

J Intern AIDS Soc

View full text Add to dashboard Cite

IntroductionStakeholder engagement is an essential component of HIV clinical trials. We define stakeholder engagement as an input by individuals or groups with an interest in HIV clinical trials to inform the design or conduct of said trials. Despite its value, stakeholder engagement to inform HIV clinical trials has not been rigorously examined. The purpose of our systematic review is to examine stakeholder engagement for HIV clinical trials and compare it to the recommendations of the UNAIDS/AVAC Good Participatory Practice (GPP) guidelines.MethodsWe used the PRISMA checklist and identified English language studies describing stakeholder engagement to inform HIV clinical trials. Four databases (PubMed, Ovid, CINAHL and Web of Science) and six journals were searched, with additional studies identified using handsearching and expert input. Two independent reviewers examined citations, abstracts and full texts. Data were extracted on country, engagement methods, stakeholder types and purpose of stakeholder engagement. Based on the GPP guidelines, we examined how frequently stakeholder engagement was conducted to inform clinical trial research question development, protocol development, recruitment, enrolment, follow‐up, results and dissemination.Results and discussionOf the 917 citations identified, 108 studies were included in the analysis. Forty‐eight studies (44.4%) described stakeholder engagement in high‐income countries, thirty (27.8%) in middle‐income countries and nine (8.3%) in low‐income countries. Fourteen methods for stakeholder engagement were identified, including individual (e.g. interviews) and group (e.g. community advisory boards) strategies. Thirty‐five types of stakeholders were engaged, with approximately half of the studies (60; 55.6%) engaging HIV‐affected community stakeholders (e.g. people living with HIV, at‐risk or related populations of interest). We observed greater frequency of stakeholder engagement to inform protocol development (49 studies; 45.4%) and trial recruitment (47 studies; 43.5%). Fewer studies described stakeholder engagement to inform post‐trial processes related to trial results (3; 2.8%) and dissemination (11; 10.2%).ConclusionsOur findings identify important directions for future stakeholder engagement research and suggestions for policy. Most notably, we found that stakeholder engagement was more frequently conducted to inform early stages of HIV clinical trials compared to later stages. In order to meet recommendations established in the GPP guidelines, greater stakeholder engagement across all clinical trial stages is needed.

show abstract

Section: Types Of Stakeholders Engaged For Hiv Clinical Trial Researchmentioning

confidence: 99%

Stakeholder engagement to inform HIV clinical trials: a systematic review of the evidence

Day

Blumberg

et al. 2018

J Intern AIDS Soc

View full text Add to dashboard Cite

show abstract

“…For example, a health committee in the Southeastern US developed research instruments to understand human immunodeficiency virus (HIV) stigma in a community, and through a collaborative research process informed local HIV clinical trials and educated practitioners on the services needed by local residents. 32 Most important is that in community-based projects, persons are not merely consulted but play a key role in and basically control any intervention.…”

Section: A Community-based Additivementioning

confidence: 99%

The Patient-Centered Medical Home as a Community-based Strategy

Franz¹,

Murphy

2017

TPJ

View full text Add to dashboard Cite

Increasing attention has been devoted to the important role that primary care will play in improving population health. One innovation, the patient-centered medical home (PCMH), aims to unite a variety of professionals with patients in the prevention and treatment of illness. Although patient perspectives are critical to this model, this article questions whether the PCMH in practice is truly community-based. That is, do physicians, planners, and other health care professionals take seriously the value of integrating local knowledge into medical care? The argument presented is that community-based philosophy contains a foundational principle that the perspectives of health care practitioners and community members must be integrated. Although many proponents of the PCMH aim to offer patient-centered and sustainable health care, focusing on this philosophical shift will ensure that services are organized by communities in collaboration with health care professionals.

show abstract

“…Patient and community engagement are now understood as cornerstones of translational research and should be integrated into all phases of the translational spectrum [1]. The convening of community advisory boards to provide input on community-engaged research has been shown to improve the success and quality of a variety of research protocols [15][16][17]. Here, we demonstrate that the formation of a CEAB not only provides opportunities to build community engagement capacity among CTSA researchers and but also among participating community members.…”

Section: Discussionmentioning

confidence: 80%

A Community Engagement Advisory Board as a strategy to improve research engagement and build institutional capacity for community-engaged research

Matthews

Anderson

Willis

et al. 2018

J. Clin. Trans. Sci.

View full text Add to dashboard Cite

PurposeCommunity engagement is deemed as critical to the success of the CTSA program. In 2009, to improve research engagement and build capacity for community-engaged research across the translational spectrum, the Center for Clinical and Translational Science at the University of Illinois at Chicago created a Community Engagement Advisory Board (CEAB). Here, we report results of our ongoing evaluation efforts.MethodsCEAB activities are evaluated using mixed methods. Annual CEAB evaluation surveys were completed from 2010 to 2016 (n=106 respondents). In 2014, two 90-minute focus groups were conducted with a subset of recent CEAB members (n=19).ResultsSurvey data suggest respondents perceive their consultations to be helpful in improving the capacity of researchers (90%) and the quality of research projects (80%). Further, CEAB members perceive themselves to have personally benefitted from their involvement including obtaining new knowledge (84%), expansion of their networks (76%), and forming new community linkages (51%). Results of the qualitative data were consistent with survey data.ConclusionsOur CEAB has improved research engagement and developed institutional capacity to conduct community-engaged research in several ways. Our findings can inform the establishment or enhancement of community engagement services for CTSA-affiliated researchers and community partners.

show abstract

Across the Miles: Process and Impacts of Collaboration with a Rural Community Advisory Board in HIV Research

Abstract: CABs can make a critical difference in conducting culturally appropriate and successful research in rural communities.

Cited by 19 publications

References 27 publications

Stakeholder engagement to inform HIV clinical trials: a systematic review of the evidence

Stakeholder engagement to inform HIV clinical trials: a systematic review of the evidence

The Patient-Centered Medical Home as a Community-based Strategy

A Community Engagement Advisory Board as a strategy to improve research engagement and build institutional capacity for community-engaged research

Contact Info

Product

Resources

About