The Challenge of Community Representation

Lawrence, Carlton; Stewart, Kearsley A.

doi:10.1177/1556264616665760

Cited by 11 publications

(8 citation statements)

References 31 publications

(41 reference statements)

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“…However, while community advisory boards are an important tool for assuring that clinical research is community-engaged (Lawrence & Stewart, 2016), few studies specifically speak about the diversity of community advisory boards and their ability to adequately address issues of diversity and identity representation. Furthermore, community advisory boards often do not go far enough in addressing specific issues related to diversity and equity that are needed in autism research and intervention development.…”

Section: Using a Community Advisory Board Framework To Inform Diversi...mentioning

confidence: 99%

Perspective: The role of diversity advisory boards in autism research

Williams

Smith

Boyd

2022

Autism

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In this perspective, we argue that the regular use of diversity advisory boards in autism research will improve the inclusivity and participation of marginalized groups in autism research and intervention development. We define a diversity advisory board as a representative group of community members, scholars, policymakers, and area experts that specifically discuss and examine research and interventions for accurate representation and consideration of underrepresented and marginalized identities such as racial, gender, sexual minorities, and dis/abilities who are often excluded from the research process. We present three arguments for forming and integrating diversity advisory boards in autism research and intervention development. First, diversity advisory boards would encourage scholars and interventionists to be intentional in considering how their intervention will work for culturally, racially, gendered, and dis/ability diverse groups. Second, diversity advisory boards will lead to increased diverse samples of autistic participants if members of the board are incentivized to support recruitment efforts from their local communities and networks. Finally, the regular use of diversity advisory boards will improve the research-to-practice gap by including a wider range of community members in the early development and implementation of autism interventions. Recommended actions researchers could take to select, maintain, and meaningfully engage a diversity advisory board are included in this perspective. Lay abstract This article argues that using groups of individuals that specifically focus on addressing issues with diversity in autism research and autism intervention development are key in ensuring that a greater amount of racial, ethnic, and gender diverse autistic individuals are included in the research and that the research is addressing the needs of these individuals and groups. We call these groups a diversity advisory board. A diversity advisory board will help improve diversity in autism research and intervention development by making sure that autism researchers (1) are intentional about addressing issues of diversity in their research and (2) are able to recruit a greater number of autistic individuals with diverse identities, and (3) by giving greater consideration to the context of diverse autistic individuals which will help autism-focused interventions work better in community settings. We give a short description of these arguments and ideas for how to form and use a diversity advisory board.

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Section: Using a Community Advisory Board Framework To Inform Diversi...mentioning

confidence: 99%

Perspective: The role of diversity advisory boards in autism research

Williams

Smith

Boyd

2022

Autism

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“…The use of community advisory boards (CAB) to engender good, ethical practices in health research in resource-constrained settings is well-known and accepted (Lawrence & Stewart, 2016; Manda-Taylor, 2013; Mwinga & Moodley, 2015; Nyirenda et al, 2017). Some of their functions include serving as volunteers to provide a bridge between the community and researchers by providing information to the community about the study goals, including information on their rights in research to help improve the informed consent process.…”

Section: Best Practicesmentioning

confidence: 99%

Barriers and Facilitators to Obtaining Informed Consent in a Critical Care Pediatric Research Ward in Southern Malawi

Manda-Taylor

Liomba

Taylor

et al. 2019

Journal of Empirical Research on Human Research Ethics

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Informed consent is an ethical requirement in clinical research. Obtaining informed consent is challenging in resource-constrained settings. We report results of a formative qualitative study that examined factors that facilitate and hinder informed consent for clinical research among critically ill children in Malawi. We argue that truly informed consent in a pediatric intensive care unit (PICU) is challenged by parental distress, time constraints when balancing care for critically ill patients with research-related tasks, and social hierarchies and community mistrust toward certain research procedures. We interviewed health care providers and parents of children attending a critical care unit to identify potential challenges and solicit strategies for addressing them. Providers and caregivers suggested practical solutions to enhance research participant understanding of clinical trial research, including the use of visual materials, community engagement strategies, and using patients as advocates in promoting understanding of research procedures.

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“…In this way, CABs provide bi-directional feedback between researchers and the community. Thus, CABs help to build mutually beneficial relationships between the researcher(s) and the communities in which the clinical trial is being implemented [ 9 ].…”

Section: Introductionmentioning

confidence: 99%

“…Moreover, most of the available studies have been done on individual or study specific CABs [ 32 ]. Only one study was identified to have investigated membership practices, selection criteria, qualifications, and challenges of CABs at six Ugandan HIV clinical research institutions [ 9 ]. Yet CAB members were observed not able to critically evaluate studies for the presence of exploitative elements in Bangkok, Thailand [ 16 ].…”

Section: Introductionmentioning

confidence: 99%

Regulation of community advisory boards during conduct of clinical trials in Uganda: a qualitative study involving stakeholders

Mijumbi

Mugenyi

Nanfuka

et al. 2023

BMC Health Serv Res

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Background Community advisory structures such as Community Advisory Boards (CABs) play an important role of helping researchers to better understand the community at each phase of the clinical trial. CABs can be a source of accurate information on the community, its perception of proposed research and may identify factors that make community members vulnerable to the problem under investigation. Although CABs help to build mutually beneficial relationships between the researcher(s) and the communities in which the clinical trial is being implemented, effective engagement would require ethical guidance and regulatory oversight. The study assessed the stakeholders’ perspectives regarding the regulatory oversight of CABs in Uganda. Methods This was an exploratory study employing qualitative methods of data collection and analysis. Key informant interviews (KIIs) with the trial investigators, CAB chairpersons, community liaison officers, regulators and Research Ethics Committee (REC) chairpersons were conducted. A KII guide was designed and utilized during key informant interviews. The guide included questions on role of investigators and CAB members in clinical trials; challenges of community engagement; facilitation of CABs; regulatory oversight of CABs; work relationships between investigators and CABs; and opinions on how community trials should be conducted among others. All interviews were conducted in English. Qualitative data were transcribed verbatim. A code book was generated based on the transcripts and study objectives. Thematic analysis was used to analyze data and identify themes. Atlas ti was used to support data analysis. Results Of the 34 respondents, 35.3% were investigators, 32.3% CAB chairpersons, 23.5% research regulators/REC Chairs and 8.8% community liaison officers. The findings of the study revealed that CABs are appointed by the research institution/researcher, operate under the guidance of the researcher with limited independence. Additionally, the CABs provide voluntary service and lack guidelines or regulatory oversight. Four themes emerged. Conclusion The operations and activities of CABs are not regulated by the national regulators or RECs. The regulatory oversight of CABs should be based on contextualized ethical guidelines. Need for additional training in research ethics, community engagement and sensitization on available ethics guidelines for research.

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The Challenge of Community Representation

Cited by 11 publications

References 31 publications

Perspective: The role of diversity advisory boards in autism research

Perspective: The role of diversity advisory boards in autism research

Barriers and Facilitators to Obtaining Informed Consent in a Critical Care Pediatric Research Ward in Southern Malawi

Regulation of community advisory boards during conduct of clinical trials in Uganda: a qualitative study involving stakeholders

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