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.

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.

Meeting the Health Promotion Needs of Hispanic Communities

1995 ◽  
Vol 9 (4) ◽  
pp. 300-311 ◽  
Author(s):  
Jane L. Delgado
Keyword(s):  
Health Educators ◽  
Community Based ◽  
Competency Training ◽  
Community Based Organizations ◽  
Advisory Boards ◽  
Community Data ◽  
Status Data ◽  
The Impact ◽  
Community Advisory Boards

This paper conducts a review of the demographic and health status data for Hispanic communities and relates them to the role of culture in health care. The author's recommend that promotion programs for Hispanic communities should focus on specific community data (morbidity rather than mortality), understand the impact of culture and language (cultural competency training and staffing), develop strong outreach components (establish community advisory boards, identify credible community spokespersons and incorporate community residents as health educators), and work in partnership (sharing funds and resources) with community-based organizations.

scholarly journals Forming and implementing community advisory boards in low- and middle-income countries: a scoping review

2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Yang Zhao ◽  
Thomas Fitzpatrick ◽  
Bin Wan ◽  
Suzanne Day ◽  
Allison Mathews ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Research Ethics ◽  
Scoping Review ◽  
Financial Support ◽  
Local Communities ◽  
Middle Income ◽  
Middle Income Countries ◽  
Advisory Boards ◽  
Community Advisory Boards ◽  
Low And Middle Income

Abstract Background Community advisory boards (CABs) have expanded beyond high-income countries (HICs) and play an increasing role in low- and middle-income country (LMIC) research. Much research has examined CABs in HICs, but less is known about CABs in LMICs. The purposes of this scoping review are to examine the creation and implementation of CABs in LMICs, including identifying frequently reported challenges, and to discuss implications for research ethics. Methods We searched five databases (PubMed, Embase, Global Health, Scopus, and Google Scholar) for publications describing or evaluating CABs in LMICs. Two researchers independently reviewed articles for inclusion. Data related to the following aspects of CABs were extracted from included publications: time, country, financial support, research focus, responsibilities, and challenges. Thematic analyses were used to summarize textual data describing challenges. Results Our search yielded 2005 citations, 83 of which were deemed eligible for inclusion. Most studies (65) were published between 2010 and 2017. Upper-middle-income countries were more likely to have studies describing CABs, with South Africa (17), China (8), and Thailand (7) having the greatest numbers. The United States National Institutes of Health was the main source of financial support for CABs. Many CABs (53/88, 60%) focused on HIV research. Thirty-four studies reported how CABs influenced the informed consent process for clinical trials or other aspects of research ethics. CAB responsibilities were related to clinical trials, including reviewing study protocols, educating local communities about research activities, and promoting the ethical conduct of research. Challenges faced by CABs included the following: incomplete ethical regulations and guidance; limited knowledge of science among members of communities and CABs; unstable and unbalanced power relationships between researchers and local communities; poor CAB management, including lack of formal participation structures and absence of CAB leadership; competing demands for time that limited participation in CAB activities; and language barriers between research staff and community members. Several challenges reflected shortcomings within the research team. Conclusions Our findings examine the formation and implementation of CABs in LMICs and identify several ethical challenges. These findings suggest the need for further ethics training among CAB members and researchers in LMICs.

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 Innovative Use of mHealth and Clinical Technology for Oncology Clinical Trials in Africa

2020 ◽  
pp. 948-953
Author(s):  
Miriam Mutebi ◽  
Rohini Bhatia ◽  
Omolola Salako ◽  
Fidel Rubagumya ◽  
Surbhi Grover ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Health Systems ◽  
Middle Income Country ◽  
Disruptive Technology ◽  
Full Potential ◽  
Middle Income ◽  
Oncology Clinical Trials ◽  
Health Related ◽  
African Context

Utilization of clinical technology and mobile health (mHealth) is expanding globally. It is important to reflect on how their usage and application could translate in low- and middle-income country (LMIC) settings. With the exponential growth and advancements of mobile and wireless technologies, LMICs are prime to adapt such technologies to potentially democratize and create solutions to health-related challenges. The role of these technologies in oncology clinical trials continues to expand. The lure of mHealth promises disruptive technology that may change the way clinical trials are designed and conducted in many settings. Its applicability in the African context is currently under consideration. Although potentially of expanding benefit, the role of these technologies requires careful and nuanced evaluation of the context in which they might be applied to harness their full potential, while mitigating possible harms or preventing further deepening of disparities within populations. Moreover, technology and digital innovations are no substitute for poor referral pathways and dysfunctional health systems and can only complement or enhance definite strategies aimed at strengthening these health systems.

scholarly journals Strategies for developing sustainable health research capacity in low and middle-income countries: a prospective, qualitative study investigating the barriers and enablers to locally led clinical trial conduct in Ethiopia, Cameroon and Sri Lanka

BMJ Open ◽  
2017 ◽  
Vol 7 (10) ◽  
pp. e017246 ◽  
Author(s):  
Samuel R P Franzen ◽  
Clare Chandler ◽  
Sisira Siribaddana ◽  
Julius Atashili ◽  
Brian Angus ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Clinical Trials ◽  
Necessary Conditions ◽  
Evidence Based ◽  
Middle Income ◽  
Trial Conduct ◽  
Middle Income Countries ◽  
Barriers And Enablers ◽  
Research Systems ◽  
Clinical Trial Conduct

ObjectivesIn 2013, the WHO stated that unless low-income and middle-income countries (LMICs) become producers of research, health goals would be hard to achieve. Among the capacities required to build a local evidence base, ability to conduct clinical trials is important. There is no evidence-based guidance for the best ways to develop locally led trial capacity. This research aims to identify the barriers and enablers to locally led clinical trial conduct in LMICs and determine strategies for their sustainable development.DesignProspective, multiple case study design consisting of interviews (n=34), focus group discussions (n=13) and process mapping exercises (n=10).SettingCase studies took place in Ethiopia (2011), Cameroon (2012) and Sri Lanka (2013).ParticipantsLocal health researchers with previous experiences of clinical trials or stakeholders with an interest in trials were purposively selected through registration searches and snowball sampling (n=100).Primary and secondary outcome measuresDiscussion notes and transcripts were analysed using thematic coding analysis. Key themes and mechanisms were identified.ResultsInstitutions and individuals were variably successful at conducting trials, but there were strong commonalities in the barriers and enablers across all levels and functions of the research systems. Transferable mechanisms were summarised into the necessary conditions for trial undertaking, which included: awareness of research, motivation, knowledge and technical skills, leadership capabilities, forming collaborations, inclusive trial operations, policy relevance and uptake and macro and institutional strengthening.ConclusionsBarriers and enablers to locally led trial undertaking exist at all levels and functions of LMIC research systems. Establishing the necessary conditions to facilitate this research will require multiple, coordinated interventions that seek to resolve them in a systemic manner. The strategies presented in the discussion provide an evidence-based framework for a self-sustaining capacity development approach. This represents an important contribution to the literature that will be relevant for research funders, users and producers.

Cancer clinical trials available in the community setting: A 5-year analysis from 1999–2004

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 6056-6056
Author(s):  
J. K. Keller ◽  
J. Bowman ◽  
J. A. Lee ◽  
M. A. Mathiason ◽  
K. A. Frisby ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Clinical Trials ◽  
Cancer Patients ◽  
Community Setting ◽  
Disease Stage ◽  
Cancer Center ◽  
Newly Diagnosed ◽  
Community Based ◽  
Eligibility Criteria ◽  
Major Barrier

6056 Background: Less than 5% of newly diagnosed cancer patients are accrued into clinical trials. In the community setting, the lack of appropriate clinical trials is a major barrier. Our prospective study in 2004 determined that 58% of newly diagnosed adult cancer patients at our community-based cancer center didn’t have a clinical trial available appropriate for their disease stage. Among those with clinical trials, 23% were subsequently found to be ineligible (Go RS, et al. Cancer 2006, in press). However, the availability of clinical trials may vary from year to year. Methods: A retrospective study was conducted to determine what clinical trials were available for newly diagnosed adult cancer patients at our institution from June 1999-July 2004. The study also investigated the proportions of newly diagnosed patients who had a clinical trial available appropriate for type and stage of disease and patients accrued. Results: Over the 5-year period, 207 (82, 87, 99, 102, 117, years 1–5, respectively) trials were available. Most (50.7%) trials were for the following cancers: breast (15.5%), lung (13.5%), head and neck (7.7%), colorectal (7.2%) and lymphoma (6.8%). ECOG (53%), RTOG (26%), and CTSU (9%) provided the majority of the trials. A total of 5,776 new adult cancer patients were seen during this period. Overall, 60% of the patients had a trial available appropriate for type and stage of their cancer, but only 103 (3%) were enrolled. There was a significant upward trend in the proportions of patients with available trials over the years (60.2%, 55.9%, 59.2%, 60.7%, 63.9%, years 1–5, respectively; Mantel-Haenszel P=.008). The proportion of patients with a trial available was highest for prostate (97.3%), lung (90.9%), and breast (73.9%), and lowest for melanoma (17.1%), renal (11.6%), and bladder (7.2%). The majority of patients accrued to trials had the following cancers: breast (32%), lung (17%), lymphoma (9%), colon (7%), and prostate (5%). Conclusions: Nearly half of the newly diagnosed adult patients at our center had no trials available appropriate for type and stage of their cancers. It is likely that if strict clinical trial eligibility criteria were applied, approximately 2/3 of our patients would not be eligible for a clinical trial. No significant financial relationships to disclose.

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