scholarly journals Exploitation and community engagement: Can Community Advisory Boards successfully assume a role minimising exploitation in international research?

2013 ◽  
Vol 15 (1) ◽  
pp. 18-26 ◽  
Author(s):  
Bridget Pratt ◽  
Khin Maung Lwin ◽  
Deborah Zion ◽  
Francois Nosten ◽  
Bebe Loff ◽  
...  
Keyword(s):  
Community Engagement ◽  
International Research ◽  
Advisory Boards ◽  
Community Advisory Boards

scholarly journals Capacity of community advisory boards for effective engagement in clinical research: a mixed methods study

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Levicatus Mugenyi ◽  
Andrew Mijumbi ◽  
Mastula Nanfuka ◽  
Collins Agaba ◽  
Fedress Kaliba ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Clinical Research ◽  
Community Engagement ◽  
Research Ethics ◽  
Health Research ◽  
Tertiary Education ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Advisory Boards ◽  
Community Advisory Boards

Abstract Background Community engagement is a key component in health research. One of the ways health researchers ensure community engagement is through Community Advisory Boards (CABs). The capacity of CABs to properly perform their role in clinical research has not been well described in many resource limited settings. In this study, we assessed the capacity of CABs for effective community engagement in Uganda. Methods We conducted a cross sectional study with mixed methods. We used structured questionnaires and key informant interviews (KII) to collect data from CAB members, trial investigators, and community liaison officers. For quantitative data, we used descriptive statistics while for qualitative data we used content analysis. Results Seventy three CAB members were interviewed using structured questionnaires; 58.9% males, median age 49 years (IQR 24–70), 71.2% had attained tertiary education, 42.5% never attended any research ethics training, only 26% had a training in human subject protection, 30.1% had training in health research, 50.7% never attended any training about the role of CABs, and 72.6% had no guidelines for their operation. On the qualitative aspect, 24 KIIs cited CAB members to have some skills and ability to understand and review study documents, offer guidance on community norms and expectations and give valuable feedback to the investigators. However, challenges like limited resources, lack of independence and guidelines, and knowledge gaps about research ethics were cited as hindrances of CABs capacity. Conclusion Though CABs have some capacity to perform their role in the Ugandan setting, their functionality is limited by lack of resources to facilitate their work, lack of independence, lack of guidelines for their operations and limited knowledge regarding issues of research ethics and protection of the rights of trial participants.

Capacity of Community Advisory Boards for Effective Engagement in Clinical Research; a Mixed Methods Study

2021 ◽  
Author(s):  
Levicatus Mugenyi ◽  
Andrew Mijumbi ◽  
Mastula Nanfuka ◽  
Collins Agaba ◽  
Fedress Kaliba ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Clinical Research ◽  
Community Engagement ◽  
Research Ethics ◽  
Health Research ◽  
Tertiary Education ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Advisory Boards ◽  
Community Advisory Boards

Abstract Background: Community engagement is a key component in health research. One of the ways health researchers ensure community engagement is through Community Advisory Boards (CABs). The capacity of CABs to properly perform their role in clinical research has not been well described in many resource limited settings. In this study, we assessed the capacity of CABs for effective community engagement in Uganda.Methods: We conducted a cross sectional study with mixed methods. We used structured questionnaires and key informant interviews (KII) to collect data from CAB members, trial investigators, and community liaison officers. For quantitative data, we used descriptive statistics while for qualitative data we used content analysis. Results: Seventy three CAB members were interviewed using structured questionnaires; 58.9% males, median age 49 years (IQR: 24-70), 71.2% had attained tertiary education, 42.5% never attended any research ethics training, only 26% had a training in human subject protection, 30.1% had training in health research, 50.7% never attended any training about the role of CABs, and 72.6% had no guidelines for their operation. On the qualitative aspect, 24 KIIs cited CAB members to have some skills and ability to understand and review study documents, offer guidance on community norms and expectations and give valuable feedback to the investigators. However, challenges like limited resources, lack of independence and guidelines, and knowledge gaps about research ethics were cited as hindrances of CABs capacity.Conclusion: Though CABs have some capacity to perform their role in the Ugandan setting, their functionality is limited by lack of resources to facilitate their work, independence, guidelines for their operations and limited knowledge.

scholarly journals How do community advisory boards fulfil their ethical role in HIV clinical trials? A protocol for a systematic review of qualitative evidence

BMJ Open ◽  
2020 ◽  
Vol 10 (4) ◽  
pp. e035368
Author(s):  
Godwin Pancras ◽  
Maryam Amour ◽  
Tosi Mwakyandile ◽  
Baraka Morris ◽  
Bruno F Sunguya ◽  
...  
Keyword(s):  
Systematic Review ◽  
Clinical Trials ◽  
Grey Literature ◽  
Cochrane Library ◽  
Global Health Research ◽  
Advisory Boards ◽  
Qualitative Evidence ◽  
Ethical Role ◽  
Hiv Clinical Trials ◽  
Community Advisory Boards

IntroductionCommunity advisory boards (CABs) continue to gain wide use and acceptance in global health research including in HIV clinical trials. They provide means through which community concerns regarding the trial can be considered by the research team, and provide an important platform of communication between the researchers and the community about study goals. Therefore, this systematic review protocol will guide the review of qualitative evidence on the ethical roles of CABs in HIV clinical trials based on the three fundamental ethical principles: respect for the person, beneficence and justice.Methods and analysisThis systematic review of qualitative evidence will involve searching four medical databases: PubMed, ScienceDirect, CINAHL and Cochrane Library. Additionally, other relevant evidence will be obtained through hand searching and grey literature. Searches will be limited to studies published in the English language from 1989 (the year that CABs were first established in HIV clinical trials) to 2019. Articles searched will be screened by two independent authors based on inclusion and exclusion criteria. Included articles will be appraised for quality using the Critical Appraisal Skills Programme checklist and followed by qualitative data extraction. Findings will be analysed based on the meta-aggregative approach with the aid of EPPI-Reviewer 4 web-based software.Ethics and disseminationEthical approval does not apply to this review. Data will be disseminated through scientific conferences and peer-reviewed journals to inform policies and stake-holders about the ethical role of CABs.PROSPERO registration numberCRD42019133787.

scholarly journals The use of community advisory boards in pragmatic clinical trials: The case of the adult day services plus project

2020 ◽  
pp. 1-11
Author(s):  
Keith A. Anderson ◽  
Holly Dabelko-Schoeny ◽  
Sokha Koeuth ◽  
Katherine Marx ◽  
Laura N. Gitlin ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Adult Day Services ◽  
Advisory Boards ◽  
Pragmatic Clinical Trials ◽  
Day Services ◽  
Community Advisory Boards

Community advisory boards and research ethics in low-income and middle-income countries: a scoping review

The Lancet ◽  
2018 ◽  
Vol 392 ◽  
pp. S42 ◽  
Author(s):  
Yang Zhao ◽  
Thomas Fitzpatrick ◽  
Bin Wan ◽  
Suzanne Day ◽  
Allison Mathews ◽  
...  
Keyword(s):  
Research Ethics ◽  
Scoping Review ◽  
Low Income ◽  
Middle Income ◽  
Middle Income Countries ◽  
Advisory Boards ◽  
Community Advisory Boards

scholarly journals Motivations and perceptions of community advisory boards in the ethics of medical research: the case of the Thai-Myanmar border

2014 ◽  
Vol 15 (1) ◽  
Author(s):  
Khin Maung Lwin ◽  
Phaik Yeong Cheah ◽  
Phaik Kin Cheah ◽  
Nicholas J White ◽  
Nicholas P J Day ◽  
...  
Keyword(s):  
Medical Research ◽  
Advisory Boards ◽  
Community Advisory Boards

scholarly journals Using Community Advisory Boards to Build Partnerships and Develop Peer-Led Services for Rural Student Veterans

2016 ◽  
Vol 10 (3) ◽  
pp. 355-364
Author(s):  
Ann M. Cheney ◽  
Traci H. Abraham ◽  
Steve Sullivan ◽  
Shane Russell ◽  
Dianne Swaim ◽  
...  
Keyword(s):  
Student Veterans ◽  
Advisory Boards ◽  
Community Advisory Boards ◽  
Rural Student

scholarly journals The role of community advisory boards in community-based HIV clinical trials: a qualitative study from Tanzania

2022 ◽  
Vol 23 (1) ◽  
Author(s):  
Godwin Pancras ◽  
Bruno F. Sunguya ◽  
Nathanael Sirili ◽  
Emmanuel Balandya ◽  
Eligius Lyamuya ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Clinical Trials ◽  
Phenomenological Approach ◽  
Community Based ◽  
Middle Income ◽  
Advisory Boards ◽  
Institutional Review ◽  
Hiv Clinical Trials ◽  
Community Advisory Boards

Abstract Background Community Advisory Boards (CAB) have become essential organs of involving communities in HIV clinical trials especially in developing countries. However, limited empirical evidence exists on the role of CABs in low and middle-income countries including Tanzania. This study aims at exploring the role of CABs in community-based HIV clinical trials conducted in Tanzania. Methodology We adopted a phenomenological approach to purposefully select HIV clinical trial stakeholders. These included CAB members, researchers and Institutional Review Board (IRB) members in Tanzania. We conducted In-depth Interviews (IDIs) with ten participants and three Focus Group Discussions (FGDs) with eighteen participants. The data were thematically analyzed with the aid of MAXQDA software version 20.2.1. Results The findings indicate that at every stage of implementation of a community-based HIV clinical trial, a functioning CAB is important for its success. This importance is based on contextualization of the informed consent process and protocol, managing rumours in the community, weighing trial risks and benefits, sensitizing the community, assisting participant recruitment, tracing and retention. However, being perceived as financial beneficiaries than community representatives emerged as a challenge to CAB members. Conclusion The study empirically indicates the need for functioning CABs in every stage of implementation of community-based HIV clinical trials. The roles of which are interwoven in serving research goals and protecting the interests of the community and that of trial participants.

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