Engaging Communities for Better Public Health Projects Outcomes: A Story of Bagamoyo Community Advisory Board Members ()
1. Introduction
Community exploitation in international collaborative research occurs when researchers refuse to provide or disseminate the results of their research to the rightful stakeholder, such as individuals, communities, governments, and those who have contributed in one way or another. Exploitation is made possible by serious poverty and extreme power differentials between researchers from high-income countries and research stakeholders from Low- and Middle-Income Countries (LMICs) (Schroeder et al., 2011) . Studies in low-income nations have shown that research presents a high risk of exploitation because some people may participate without a full understanding of the risk and benefits, since they are attracted to monetary incentives or health care (Nyirenda et al., 2018) . It is also estimated that it takes about 17 years for research evidence to reach clinical practice, and as a result, fewer than half of today’s patients with many common diseases are receiving adequate care using evidence-based medicine (Newman et al., 2011) . An essential tool for bridging this gap between scientific discovery, clinical care and reducing community exploitation is Community Advisory Boards (CABs).
CABs are increasingly promoted in international research guidelines to protect communities from exploitation and harm (Nyirenda et al., 2018) . Initially, CABs were introduced in HIV/AIDS research to strengthen the representation of people affected by or living with HIV/AIDS in research planning and implementation (Lawrence & Stewart, 2016) . The roles of CABs in health research include reviewing study protocols and informed consent forms, representing community concerns, advocating for the rights of research participants to provide advice, identifying research priorities, and assisting in the development of study materials, study design and implementation (Cramer et al., 2018; Newman et al., 2011; Maung Lwin et al., 2014; Mlambo et al., 2019; Nyirenda et al., 2018; Ortega et al., 2018; Pratt et al., 2015; Yuan et al., 2020; Zhao et al., 2019) . CABs provide an infrastructure for community members to voice concerns and priorities that otherwise might not enter into the research agenda, and advise about suitable research processes that are respectful of and acceptable to the community (Newman et al., 2011) .
This paper describes the perspectives of two research scientists (FM and OJ) on the perceived role of CAB in research projects, the roles of CAB members in the research projects, the benefits of being a CAB member, the challenges facing CABs, and the lesson learned. We officially engaged in various CAB activities from January 2023 to date and we had opportunities to participate in CAB meetings, so as to gain a deeper understanding about the Bagamoyo CAB. During our interactions and engagement in CAB activities, we had several conversations with CAB members, which helped us to gain insights about CAB participation in public health projects. We reviewed different CAB reports, especially those focused on the activities done by the CAB in different research projects, we then highlighted the challenges and the success mentioned in the report and then we discussed the lesson learned and reflected on the recommendations to address the underlying challenges. Overall, our engagement with CAB members has been a rewarding experience that has enriched our understanding of community engagement in research. We believe that our findings will contribute to the development of more effective strategies for community engagement, and will help to promote the meaningful participation of communities in research.
The rationale for conducting this study stems from the growing recognition of the need for community engagement and protection of research stakeholders, particularly in Low- and Middle-Income Countries (LMICs). The study contributes to the development of more effective strategies for community engagement in research. It is essential to understand the experiences and perspectives of CAB members to ensure that their participation is meaningful and that their voices are adequately represented in research planning and implementation. The views of the research scientist will help inform researchers, policymakers, and organizations involved in international collaborative research about the importance of CABs, the potential benefits they offer, and the strategies to overcome the challenges for effective community engagement.
2. Perceived Role of the CAB in Research Projects
During my time of engagement with Bagamoyo CAB, I have had the opportunity to reflect on the role of the CAB in research projects. One of the key reflections that emerged is the perceived role of the CAB in facilitating communication between research institutions and the community. The CAB is seen as a vehicle for communication, ensuring that the community is aware of research activities and the researchers’ intentions. This role is critical in building trust between the research team and the community, as it enables the community to provide input and feedback on the research process (FM).
In addition to facilitating communication, the CAB is also seen as representing the community in the research process. CAB members described their role in ensuring that research carried out responds to genuine community needs and priorities, and that the research does not harm the community in any way. This role is essential in protecting the community and ensuring that research is conducted in an ethical and respectful manner (FM).
Reflecting on these perspectives, I have come to appreciate the critical role of the CAB in community-engaged research. I have seen firsthand the importance of communication, representation, and empowerment in building trust between the research team and the community. By facilitating these processes, the CAB can help to ensure that research is ethical, respectful, and responsive to the needs and priorities of the community (FM).
3. CAB Members’ Roles in Research Projects
We had the opportunity to engage with the Community Advisory Board (CAB) members to discuss their roles in research projects. It was interesting to note that the perceptions of the CAB’s role were largely in line with the existing literature and the original aims of the CAB charter in Bagamoyo. However, what stood out were the additional functions that the CAB members saw themselves fulfilling (OJ).
During our engagement, some members mentioned that they perceived their role as one of organizing and coordinating all CAB activities, which was something that we had not considered before. It made us realize that while we had a clear understanding of the CAB’s role in the research project, there were other important aspects of their work that we were not aware of (OJ).
Another significant function that was highlighted by the CAB members was their role in educating their communities on health issues. This was especially important as it aligned with our goal of ensuring that the research, we were conducting had a positive impact on the community. It was clear that the CAB members saw themselves as advocates for the community and were committed to ensuring that the research we conducted responded to the genuine needs of the community while protecting them from potential harms (FM).
During our engagement, one of the CAB members who was a female nurse from Bagamoyo District hospital, spoke about the importance of health education in the community. She highlighted the various health issues that she was actively educating her community about, including Tuberculosis, Malaria, COVID-19, and HIV/AIDS. The member also focused on educating her neighbors about the importance of washing hands, boiling water, sleeping with bed nets, and taking care of their health (OJ).
The nurse’s contribution to the CAB was particularly significant as she brought a wealth of knowledge and experience in the healthcare sector. Her role in educating the community about health issues was critical in ensuring that the research project had a positive impact on the community. It was evident that she was committed to the project and her community, and her contributions were valuable in achieving the project’s objectives.
Overall, the engagement with the CAB members highlighted the diverse roles that they played in the research project. Their contributions were essential in ensuring that the research was conducted ethically and responded to the genuine needs of the community. It was a privilege to work alongside such committed and passionate individuals who were dedicated to improving the health and wellbeing of their communities.
4. The CAB as a Place to Learn
There was a widely shared view among CAB members that one of the main benefits of the CAB for them during their time as members had been as a place to learn. During our engagement we asked CAB members about their experiences in the CAB, many of them described a range of learning opportunities that they had encountered. In particular, the CAB provided a good opportunity for them to learn about Ifakara Health Institute (IHI) and its research activities. Several members highlighted the fact that they had gained knowledge in relation to health research projects implemented by IHI, specifically on diseases such as Malaria, Tuberculosis (TB), and HIV.
Interestingly, some CAB members mentioned that being a part of the CAB was the first time they had come into contact with the concept of ethics, specifically the ethics of research. It was evident that the CAB played an important role in increasing awareness of ethical considerations in research projects and the impact it can have on the community. Overall, the CAB provided a unique and valuable opportunity for members to learn about research and ethical considerations that they may not have been exposed to otherwise.
Some of the CAB members highlighted the ways in which their membership as CAB had provided them with important skills which might be useful elsewhere in their lives. For example, one of the CAB members said that one of the most important things she had learned is how to effectively present and deliver speech to a community. This leads into the second main way in which CAB members saw their membership as providing important personal benefits. Others have learned about health stakeholders and their roles in health services.
5. Challenges in Bagamoyo CAB Roles Implementation
During our engagement with the community members, we identified several issues that hindered the effective functioning of the CAB. The primary challenge that we encountered was the lack of adequate funding, which severely limited the CAB’s ability to carry out its activities. Additionally, the CAB’s reliance on research project finances was identified as a significant concern. Another issue we noted was the structure of the CAB meetings, which appeared disorganized and lacked proper planning, leading to questions about the sustainability of the CAB’s activities. Moreover, the lack of cooperation from local authorities was identified as a significant challenge, which presented a considerable obstacle to the CAB’s efforts to achieve its goals. Finally, we observed a high level of superstition beliefs in the community, which undermined the credibility of the CAB’s activities. We discussed these challenges in details.
6. Financial Challenges
The financial challenges facing the Bagamoyo CAB are a significant hindrance to its effective functioning. During our engagement with CAB members, we learned that the budget allocated for CAB activities is often insufficient, and the CAB relies heavily on funding from sponsors and research projects. This reliance on external funding restricts the CAB’s autonomy, as it limits the scope of its activities to the priorities and goals of the sponsor. CAB members expressed concerns that the limited and narrowly defined funding from sponsors may not always align with the community’s most pressing needs. For example, while the CAB received funding from the TB Alliance, the resources were only allocated towards TB-related projects, despite other issues within the community that require attention.
Furthermore, the annual nature of the funds provided by sponsors adds to the financial insecurity of the CAB. The members expressed that this made it challenging to plan and execute long-term projects, given the uncertain availability of funding from year to year. Our engagement with members of the Bagamoyo CAB also revealed that the lack of funds not only limits the CAB’s ability to plan and execute long-term projects but also hinders the members’ learning and community outreach efforts. Some members expressed a desire to visit other established CABs to learn from their experiences and strategies, but the lack of funds prevented them from doing so. This highlights the importance of capacity-building and knowledge-sharing among CABs, which can only be achieved with sufficient funding.
CAB members emphasized the need for community outreach efforts to combat the prevalence of superstition beliefs regarding health in the community. Despite the success of past events like sports events that provided education on Tuberculosis (TB), the CAB has been unable to organize more events due to a lack of resources. This reflects a missed opportunity for the CAB to engage with the community and raise awareness on important health issues. It is essential to recognize the importance of community outreach efforts in promoting community health and well-being. However, these efforts require adequate funding to be effective. The lack of funds not only limits the CAB’s ability to plan and execute community outreach events, but it also restricts their capacity to reach the community comprehensively.
Our engagement with CAB members also revealed that some CAB leaders use their own personal funds to carry out CAB’s responsibilities due to the lack of sufficient funding. This highlights the challenges facing community-led organizations that rely on volunteers who often have limited financial resources. The commitment and dedication of these CAB leaders are commendable, but it is not sustainable for them to continue financing their duties indefinitely. The lack of financial support may also lead to the inability of the CAB to fully execute its responsibilities, which may have long-term consequences for the community. It is crucial to ensure that CAB leaders have the necessary resources to perform their duties effectively. This includes providing financial support for communication, transportation, and other related expenses. It is essential to recognize the value of the work that CAB leaders do and to ensure that they are not burdened with additional financial responsibilities. The provision of financial support for CAB leaders can enhance the effectiveness of the organization in addressing community health needs. It can also motivate and encourage more individuals to become involved in community-led organizations, knowing that their contributions are valued and appreciated.
7. Lack of Proper Working Office for CAB
The lack of a proper working office has been identified as a major challenge facing the Community Advisory Board (CAB) in Bagamoyo. Without a dedicated office space, CAB members have had to work from home, using their own equipment and resources, which has limited their ability to carry out their responsibilities effectively.
During our engagement with CAB members, one of the CAB mentioned that the lack of an office has had a significant impact on their ability to communicate with fellow members and carry out various activities. They have had to use their personal airtime and equipment to perform their duties, which has been a financial burden. This situation is not unique to this particular leader but is also experienced by other members of the leadership team.
The lack of a proper office has also limited the ability of CAB to reach out to the community effectively. Some responsibilities have not been carried out, which has set back efforts to ensure that research project information is disseminated to the community in a timely manner. This is a significant challenge that has affected the overall functioning of the CAB.
It is important that the CAB leaders have access to a proper working office to carry out their duties effectively. Having a dedicated space will provide them with the resources they need to reach out to the community and disseminate research project information in a timely and effective manner. The CAB can also use this space as a venue for meetings and other activities, which will help to build stronger relationships with the community and facilitate the smooth functioning of the organization.
8. The Structure of CAB Meetings
The structure of meetings within the Bagamoyo CAB has been identified as a significant hindrance to the effective functioning of the organization. The leaders have highlighted the challenges that arise due to the limited number of meetings held throughout the year. With only four meetings held annually, the leaders struggle to keep the members informed about the organization’s activities and the issues they need to address. It is clear that the current structure of meetings has a negative impact on the CAB’s ability to address the community’s concerns effectively. The leaders expressed their desire to hold more meetings, at least once a month, to keep members informed and ensure they can work efficiently. However, budgetary constraints have made this impossible.
The infrequency of meetings also makes it challenging for the CAB to keep up with the research projects they are involved in, limiting their ability to communicate critical information to the community in a timely manner. It is evident that a review of the meeting structure within the CAB is necessary to ensure they can function more efficiently.
9. Concerns about Sustainability of the CAB
The challenges faced by the Bagamoyo CAB in terms of sustainability and lack of cooperation from local authorities are significant obstacles that need to be addressed. CAB members are concerned about the future of their organization due to limited resources and support. The lack of motivation and participation from members is a major concern, and the limited number of meetings per year is not enough to keep everyone engaged and informed about important matters.
The sustainability of CABs is crucial for the success of research projects and community engagement. Well-managed boards are often able to continue even amid funding difficulties, but this requires strategies that instill a sense of empowerment and capacity building among members. CAB leaders should recognize the contributions of their members and provide some form of compensation to promote continued engagement.
In addition to internal challenges, the lack of cooperation from local authorities is also a major issue. During our engagement, CAB members have expressed frustration about the lack of support from local leaders when trying to organize community events or provide education on health issues. This lack of support is due to the perception that the local leader does not benefit from the activity and sees it as a waste of time.
10. High Level of Superstitious Beliefs in the Community
The presence of superstitious beliefs in a community can pose significant challenges to implementing health-related activities. It is essential to understand the cultural context and beliefs of a community to develop effective strategies to overcome these challenges. In the case of Bagamoyo CAB, the members have reported that there was a significant level of superstitious beliefs in the community that made it difficult to implement their activities. Superstitious beliefs are often deeply ingrained in a community’s culture, and changing them can take a lot of effort and time. Bagamoyo CAB members noted that, in the past, people would rely on traditional healers for their health needs rather than seeking medical attention. This indicates a lack of understanding of the importance of seeking medical treatment for illnesses.
Our engagement with CAB member revealed that, CAB members have been working hard to educate the community on health matters, and there has been some progress in changing these beliefs. This highlights the importance of community engagement and education to change deeply ingrained cultural practices that can negatively impact health outcomes.
11. Success Achieved by the Bagamoyo CAB
The Bagamoyo CAB has faced many challenges in carrying out its mission and responsibilities, but it has also achieved some success since its establishment. One of the major successes of CAB is conducting training sessions for its members. CAB has provided a toolkit for its members that explain what issues a CAB member should learn. This has helped the members to acquire knowledge and skills necessary to execute their responsibilities and engage the community.
Training sessions are important for any organization, especially for a community-based organization like CAB. The training sessions help in building capacity, increasing knowledge, and developing skills. Members of CAB have been equipped with knowledge about various health issues affecting their community, as well as how to address these issues. The members have been trained on how to conduct research and surveys, how to analyze data, and how to communicate the findings to the community. By providing training sessions, CAB has empowered its members to be agents of change within their communities. The members have been able to take charge of their own health and that of their families. They have become advocates for better healthcare services, improved sanitation, and hygiene practices. Through CAB, the community has become more aware of their health needs and how to address them. The training sessions provided by CAB have also created a platform for members to share their experiences and challenges. This has helped in fostering a sense of community and solidarity among members, as they work together towards a common goal. Members have been able to share ideas and collaborate on various projects, which has helped in increasing the impact of CAB’s activities.
CAB members have remained committed to their cause of improving the health and well-being of the community. The CAB’s success is also an indication of the importance of community-based organizations in addressing health challenges at the local level. The Bagamoyo CAB has demonstrated that community-based organizations can be effective in addressing health challenges, even in resource-limited settings.
A very big success that was mentioned by every CAB member was an increase in community awareness and knowledge on health matters especially TB. As mentioned in the challenge section, communities in Bagamoyo had strong beliefs in superstitions. CAB members said that, one among the goals of establishing the CAB was to educate the communities about health issues and importance of visiting to the hospital when someone is feeling or showed symptoms of illness. CAB members are very proud that there are big changes in the communities, people are very motivated to attend hospitals to check their health.
Another major success of CAB was changing the community’s perception on the activities carried out by IHI. There used to be a negative rumor in the community living near the IHI laboratory, where people had misconceptions that the institute sometimes releases mosquitoes that were bred in the institute’s laboratory into community. It has been stated that, after CAB member visited the mosquito breeding project at Kingani IHI Bagamoyo, the member gained sufficient education about how mosquitoes are bred, what they ate and how they are used in various trials. CAB members worked very hard to provide education about the misinformation and the community understood well.
12. Discussion
This paper highlights practical experiences of engaging CAB in public research projects. The importance of engaging communities through establishing CABs when conducting public projects have been well articulated in the literature (Crawford, n.d.; Newman et al., 2011; Maung Lwin et al., 2014; Nyirenda et al., 2018; Ortega et al., 2018; Pratt et al., 2015) . The paper demonstrated that CAB members have a shared agreement on the role of the CAB as whole, as well as their roles in the projects. CABs have been linked to having a role in protecting the rights of study participants and communities, providing information about the projects to the communities and ensuring full community participation and ownership of the projects. In addition, CAB member were able to identify some challenges faced implementation of CAB roles. Almost all CAB members mentioned financial challenges as one of the major barriers to CAB functioning. This has led to relying solely on researchers’ projects to conduct CAB activities. It has also resulted in the CAB being unable to carry out many beneficial activities in the community and waiting until researchers want to use CAB for their studies.
12.1. Lesson Learned for Future CABs in Tanzania and Elsewhere
The main aim in conducting this work was to better understand the challenges faced by Bagamoyo CAB, the success achieved and gain insight into the on-the-ground mechanisms that they used to engage with community members in different public projects conducted by IHI and researchers.
12.2. Value of Engaging CABs in Public Research
As confirmed in other studies (Crawford, n.d.; Newman et al., 2011; Mlambo et al., 2019; Nyirenda et al., 2018) , there was value in engaging CAB as part of the research projects conducted in Bagamoyo. CAB members had a role in communicating and sharing information about the study and projects in their communities. Sometimes dispelled misconceptions about the projects implemented and acted as a link to and a voice of the communities. While CAB contributed to strengthening community engagement, there were some challenges highlighted by CAB members that provide important lessons for future CAB functioning including CAB independence, appropriate budget allocation, meetings structures, continuous training and capacity building for sustainability.
12.3. Dependence of CABs
The dependence of Bagamoyo CAB on research projects regarding issues such as logistics of facilitating meetings, especially transports, meal and allowances was a challenge for CAB members. Relying on projects or research funds to conduct CAB meetings has held CAB to only conduct four meetings in a year, even though realistically there should have been monthly meetings. Other studies (Marsh et al., 2008; Maung Lwin et al., 2014) have recommended the use of non-specific CABs, arguing that such a structure not only allows for independent functioning of CAB, but also encourages sustainability of CABs. In the context of Bagamoyo CAB, a recommendation would be to establish a non-study-specific CAB, the operation and budget of which could be facilitated as an independent entity, or to explore having a CAB that is affiliated with the Ministry of Health, although this would also pose potential issues around independence. If CAB could operate its own bank account, the speed of efficiency would surely increase. The injection of funds into the account is to be in accordance with the approved budget.
The CAB may need to explore alternative funding sources, including grants from foundations or government institutions. Additionally, the CAB may need to develop fundraising strategies that prioritize securing resources for broader community issues that go beyond the scope of the CAB’s current sponsors. Ultimately, securing adequate and sustainable funding is critical for the CAB’s long-term viability and ability to fulfill its mission of promoting community well-being.
12.4. Sustainability
A plan for sustainability is very important for CABs. Training and capacity building for CAB members on different topics, such as the study protocol, the particularities of the intervention being researched or implemented, and research ethics, have been recommended in other studies (Marsh et al., 2008; Safo et al., 2016) . Based on the findings of this study, we recommend that training should be conducted continuously rather than only conducted at the beginning of the projects. Also, CAB members should be consulted regarding areas in which they require capacity building and training should then be customized.
It is important to create a more sustainable and supportive environment for CABs. Providing adequate resources and recognition for members’ contributions will go a long way in promoting engagement and retention. Additionally, there needs to be better communication and cooperation between local authorities and CABs to ensure that community events and education initiatives are successful.
12.5. Scope and Roles of CABs
It is also an important that the scope of the CAB be continuously reviewed with CAB members when forming CABs, and throughout the implementation of research projects. The ways in which they represent and interact with communities be discussed, in order to identify any issues that may impact the functioning of the CAB. CAB ToRs and functions should be clearly communicated to the CAB, the research team and communities. CAB and the affiliated organizations should make clear CABs role, qualification standards, and selection process to the community.
12.6. Payments and Allowances
Recognition of CAB members’ contribution of time, resources, and expertise through some type of compensation, promotes continued engagement in the partnership. Many partnerships do not have the means to provide monetary remuneration. Providing allowances to CAB members can increase motivation for members to attend meetings and be active in contributing to various social issues.
13. Limitations of the Study
While the study on the Bagamoyo Community Advisory Board (CAB) members’ engagement in public health projects provided valuable insights, it is important to acknowledge certain limitations that may have influenced the findings and should be considered when interpreting the results. The study focused exclusively on the Bagamoyo community and the experiences of its CAB members. Therefore, the findings may not be directly applicable to other communities or CABs with different demographic, cultural, or contextual characteristics. It is crucial to exercise caution when generalizing these findings to other settings, as community dynamics and project outcomes can vary significantly. Also, the study relied on a relatively small sample size of Bagamoyo CAB members. While efforts were made to ensure diversity and representation within the sample, the limited number of participants may have restricted the range of perspectives captured. Furthermore, the data collected for this study were primarily based on self-reporting by CAB members. This introduces the potential for social desirability bias, where participants may provide responses that they perceive to be more socially acceptable or desirable. This bias might influence the accuracy or completeness of the information gathered, potentially leading to an overestimation or underestimation of the true level of community engagement and its impact on public health projects. Acknowledging these limitations is essential for a comprehensive understanding of the study’s findings. Future research should strive to address these limitations and explore similar topics across diverse populations to enhance the generalizability and applicability of the findings in different settings.
14. Conclusion
The experience of Bagamoyo CAB members demonstrates that using CABs is a valuable mechanism and insightful mechanism to engage communities in the public project’s implementation. This study also highlights some considerations as lessons learned that could impact CAB function. The lack of funds is a significant challenge facing the Bagamoyo CAB, limiting not only the organization’s ability to execute projects, but also restricting its capacity for learning and community outreach. Addressing this challenge requires a comprehensive approach that includes exploring alternative funding sources, prioritizing fundraising efforts, and fostering collaborations with established CABs. The lack of a proper working office is a significant challenge facing the CAB in Bagamoyo. It is important that this issue is addressed to provide the CAB leaders with the necessary resources and space to carry out their responsibilities effectively. It is essential to recognize the importance of regular meetings in facilitating effective communication and collaboration within an organization. The Bagamoyo CAB’s limited number of meetings has resulted in significant challenges in fulfilling its mandate, and this needs to be addressed urgently. It is vital to provide adequate resources to enable the organization to hold regular meetings and carry out its responsibilities effectively.
Overall, the successes achieved by the Bagamoyo CAB are worth celebrating, and the challenges they face should not discourage them from continuing with their important work. It is essential to support community-based organizations like the Bagamoyo CAB, which play a critical role in promoting community health and well-being. With continued support and dedication, community-based organizations can make a significant impact in addressing health challenges and improving the lives of people in the community.
Acknowledgements
We are grateful to CAB members and community members for sharing their experiences with us. We also wish to thank TB Alliance and Panacea for funding this study.
Authors’ Contributions
F.M. and O.A.J. both participate in the drafting and reviewing of the manuscript. All authors read and approved the final manuscript and agreed on its submission.
Funding
This project was funded by the TB Alliance organization.
List of Abbreviations
CAB Community Advisory Board
IHI Ifakara Health Institute
TB Tuberculosis
LMICs Low- and Middle-Income Countries
HIV Human Immune Virus