Micky Hingorani
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I live in a small Caribbean Country. population of just about 100, 000 people. I am not aware of any active research going on but there are numerous projects which engage stakeholders at the community level. The Community Advisory Board (CAB) is a new concept by name but has been happening adhoc for many of the projects that are ongoing. It was funny to learn the acronym CAB in a new setting as it is a favourite acrimony in the CPR world where it means compressions/circulation, airway and breathing. the funny analogy to interventions on ground is that if CAB isn’t applied then CAB will have to resuscitate! Either way it remains a life saving/project saving strategy.
Whenever a community intervention is to happen, the team will look at the data base of stakeholders to see those who will be able to make an input for the issue at hand. This approach has always lent itself to a top down approach. I can see how the CAB when applied can make a big difference to ownership and autonomy at the community level.
One methodology that engages the community is called VCA – vulnerability and capacity assessment similar to another called risk assessment. While on ground in a community, the volunteers through interviews, observations and research, find out the grassroots organizations that exist in community. The community gatekeeper is sought out and he/she asked for the groups that exist in community on whom the community rely with their business – safety and security issues, planning issues and health issues etc. Politics and sometimes to a lesser extent religion are often ill advised in many communities.
At the end of the day community engagement makes access quite easier, enables the atmosphere for cordial relationships and ultimately speeds up conflict resolution if the need ever arises.
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Early in the planning stage is to first develop a trusting , constructive relationship with stakeholders at all levels.We thrive to be honest ,open and clear as possible to the stakeholders
Ensure that they have a clear understanding about the research and for them to acknowledge and consider the benefits of the trail. We engage the community stakeholders more into the research process,make sure that their inputs are incoporated into the decision making of the research process. We keep them updated about any changes or developments throughout. Also we let the community leaders,local media,traditional healers or a respected elder from the community to act as a representative between the research team and stakeholders.Stakeholders can express their consent and also how they will like the research to conducted and which are the appropriate ways to do so. we do not consider stakeholders as participant only into our trails bt as partners which is why program,meetings are generated for both the stakeholder and research team for them to learn more abt each other. -
At my site we had no community engagement team before, it is just recently my organization decided to have a team of community engagement which could take people’s views from the community and en-cooperate them in clinical studies. So, we have started to learn from other experienced sites on how their community engagement teams work in engaging the community in clinical research studies.
But as a newly formed team of community engagement we do community engagement by conducting mobilization meetings with community leaders, influential people like older people, traditional healers and parents in a target population, but also we conduct meetings with gatekeepers such as school teachers and religious leaders who have people at their back with the aim of learning from them about the community’s ways of life in general and how research studies can be accepted in the community.
Therefore, through those mentioned community engagement activities we are able to collect a number of information regarding the community’s norms, values and culture which are used to help a research team to work in the community. And it has worked out because we have been received with the community to conduct research studies in the community without any resistance.
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Hello! Everyone
To ensure community input and support a Community Action Board (CAB) will be necessary. My research targeted population will be MSM and a CAB currently exist. I plan to review the membership list to ensure that other perspective stakeholders were not omitted. Additionally, depending on the research project I envision soliciting individuals from college campuses to serve on the CAB so they can provide input from a youth perspective.
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By implementing the CAB right from the beginning, keeping it as diverse and representative of our stakeholders as possible, and making sure that in our meetings every member can voice their concerns regard any subject related to the trial, specially concerning the community they represent.
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In my organization after protocol development, consultation meetings begin especially with district leaders, local government officials ,we involve the regulatory bodies like the ethics committees ,Uganda National committee on science and technology (UNCST) ,National Drug authority etc.
Actually most work is done through the CAB.because it is composed of all categories of people , beliefs and religions.The community get involved and they really feel that they are part and partial of programs or studies introduced to the community. There some historical studies where we . we thought recruitment was going to be had but we were shocked by the recruitment period. we recruited 1000 discordant couples in less than a year and also there was a cohort on prostitutes in Lukaya on Mbarara high way. The chairman of a given area would lead the study team to carry out health education talks and house to house mobilization, we had a high retention rates.
The CAB is very important in bringing feedback this improves communication with stakeholders and the study team hence service delivery.
We have participants focus group discussions and participants day out., here they open up and air out all their concerns and fears.so it is very important to involve all stake holders as early as possible and at e very stage. -
I spoke with sis Nozizwe Makola about this issue so she could share her insights as someone who is well placed and more experienced than I am and have been at the centre since the inception of the PopART trial. She is the Community Liaison Officer. She said that in her role she engaged with higher level leaders of the community including senior managers from the Department of Health and also held discussions with a number of non-governmental organisations so that everyone was aware and could have input from the very onset to help contribute in directing the shape the trial was to take and things that needed to be considered in case they were overlooked while planning as the centre and specifically for the PopART trial.
She also says that she missed out on some of the lower level community structures especially the South African Civic Organisation (SANCO) – which is one of the very influential community based structures in terms of what communities can or cannot take on and their perceptions of the potential benefits or risks any program or project that is is proposed pose to a community. She says at that point she was of the opinion that SANCO will get the information from the higher level leaders. She says this had a potential of affecting the progress of the project in a negative way as community members indicated that they were not consulted.
I also had a privilege of transcribing one of the recorded interactions of one of the community mobilizers who are the team that sis Nozizwe manages where he was sharing his experiences of how during the early stages of the PopART trial they were creating awareness, getting community input and buy in and clarifying or correcting any misconceptions that the community had about what the trial overall goals were and how was it going to be of benefit to the trial site communities in particular and Western Cape or even South Africa as a whole. He says that initially they had to engage with SANCO which was almost making up for what sis Nozizwe missed in her early engagements so they could get a buy in from them and leads in terms of key stakeholders to engage with further in the communities. He says they also visited local churches, schools, local shebeens/ tarvens (township “bars”) to make presentations about the trial. He says they were well received in most of these places but sometimes experienced problems with ward councilors (who are mainly political party aligned) especially when there were tensions amongst them and they would be an expected to support one ward councilor over the other. So those were some of the tensions they had to manage carefully and sensitively so that the trial is not perceived as being aligned to a particular political organisation which might create problems.
As some of the people who are responsible for the implementation of the trial we find at times that even though the community engagement department has done its work for some reason there is communication problems and in which case we must at that level before we can undertake any research activities with the communities we must still first engage to get buy in and negotiate entry and acceptance into communities. As part of the trial activities we also engage with key populations such as adolescents, MSM, FSW, homeless people and so on and we realise these are the groups that are overlooked or at least their input at the planning stage of the trial especially if it did not start out as targeting them specifically. So these are the groups that get overlooked during initial planning stages and this is regrettable because there is so much to learn from them about how to engage in a way that is respecting, understanding, non-judgmental and inclusive to say the least. For example one of our senior managers was sharing during a staff meeting about the engagement they had with young people around the study which is currently underway and still at planning stage that is targeted at young people and their experiences of HIV she was saying that amongst other things young people who attended the engagement meeting they had were saying that everybody is trying to do the same or similar thing with them and such efforts they feel are not coordinated so that for example if one trial at a particular institution is similar to the one that is undertaken here at the centre, they were wondering why those institutions do not come together instead of going after them separately. She was saying she was sensing that the young people in that meeting were somehow perhaps feeling a bit over researched. The other challenge with what they were saying is the issue of incentives and the reluctance to participate by participants in some studies that provide minimal incentives compared to the many they had already been involved in where incentive were a bit lucrative.
For instance we are finalising recruiting female sex workers to participate in our ethnographic qualitative cohort study and they were saying to us if we are not going to give them a certain amount of money like the other institution that they currently have interactions with they are not going to participate because for them time is money.
So to be aware of such issues from the very onset is critical this also informs how budgets must be adjusted to help accommodate research site community needs especially those related to trial overall goals.
Ongoing community engagement is critical but more so at the initial planning stage.
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Philister
We have a well established CAB with a representation of various stakeholder in the community, who provide input to any upcoming protocol on how engagement can be conducted,the purpose and values can be incorporated in the trial during the conduct of research.
Identification of broader, national stakeholders who would influence the acceptability of the trial, provide expertise, clarity and provide constructive long term collaborative engagement which enhance long trusting relationship.
A formative research conducted to collate the views of stakeholders and regular formal and informal meetings are held to discuss the conduct of the trial.
Consultative stakeholders meeting are held with various stakeholders during the planning stage to understand and provide clarity around important trial-related information. we also listen to their thoughts and adjust according to the advise received. These feedback is used for future improvement of planing and engagement activities too. -
The first step is to map out national and broader stakeholders. With the expertise of these stakeholders and based on research, the community for the trial program would be identify. Regular advocacy visits would be conducted to the community involving the community stakeholders, other stakeholders and the team. It is at this stage that potential trial participants are selected and informed of their voluntary participation; potential trial participants, their families and community stakeholders would participate in drafting the guidelines for participant safety and program monitoring, and to also constitute a Community Advisory Board (CAB) that would play supervisory roles during the trial program.
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well my team ensure community input and support for the overall goal by continually meeting with the community stakeholders and during the meetings the community gets an opportunity to voice out their concerns , inputs and their suggestions then the team make sure that they take all the concerns into consideration. Even during early planning stage the community stakeholder gets to be part of the planning team and their opinions and inputs are acknowledged. our team understand the importance of involving the communities in planing hence we always say in the meetings that there there will be no trails without the community stakeholder and for our upcoming trail set to resume at the end of october our team is planning to use local media such as local radio stations and local newspapers to reach out to the community stakeholders and to obtain inputs and also to provide feedback to the community about the project ‘s progess.
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The VMCC study in Kenya was conducted within high risk HIV/AIDS regions. The regions culture dictates that a man becomes a man through removal of frontal teeth. The study team therefore had to tread carefully as circumcision was going against a communities belief and cultural system.
The first step was to talk to the community elders and explain the purpose of the intervention, its usefulness and long term impact. in the communities it is the council of elders who dictate the cultural norms, beliefs and practices. The team gathered their views, concerns and input and that was used to develop an encompassing proposal. once the elders views had been gathered, community advisory board was constituted, community meetings convened and the community educated on the project and its importance. The team then used the media platform to enlighten the masses about VMCC. Adverts were run on TV and local redio on the importance of circumcision way before the project roll out.
The team also ensured it used the local hospitals as the implementation sites to avoid the stigma that would come if tents were used.-
Hi Mariam.
Thanks for your interesting response to this week’s discussion questions. I noted in your post that your research team used the media in creating public awareness of VMCC. We also used the mass media in our project – radio announcements, newspaper reports e.t.c. What are your thoughts on the use of the media to disseminate information about a research project? In my opinion, the media can either be a good ally or be the bane of a trial. The media has a pivotal to play in shaping the opinions and attitudes of stakeholders and even the society at large. Poor reporting in the form of inaccuracies, sensationalism, selective reporting and so on can reinforce myths about a trial, cause stakeholders to misconstrue the trial results or contribute to premature closure of a trial.(1) To forestall such potential challenges, we identified the media as key stakeholders in the project and had a number of round table discussions in the early planning stages with representatives of local media; we trained journalists on the research and ensured that the media is represented on the community advisory board.
Reference
(1) Olsen CK, Kutner LA. (2008). The public’s understanding of research and the role of mass media. Media Psychology Review (Online) http://mprcenter.org/review/olson-electronic-media-ed/ (Accessed 26 September 2016)
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Hello – My name is Pamela Valera and I work in an academic setting. When I co-founded a a working group with over 30 organizations involved, we had bi-monthly meetings to ensure that everyone was on the same page and we as a group developed activities and projects that through group consensus were agreed upon. We also posted the minutes a day after the meeting and asked folks to comment and provide any feedback. In addition, we had a listserv where we communicated and addressed issues that were discussed at each bi-monthly meetings. Finally, after each quarter we rotated responsibilities to a different stakeholder. All of these activities created common goals and common understanding of stakeholder engagement.
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Early in the planning stage of the Nigerian PrEP Demonstration Project, our research team set out to identify the relevant stakeholders in the project. We consulted already known stakeholders in HIV programmes in Nigeria and working together, a comprehensive list was drawn up which included representatives of the Federal and State Ministry of Health, Federal Health Parastatals, and the National and State Agencies for the Control of AIDS (NACA); National HIV Prevention and Treatment Technical Working Group members; donor organizations and implementing partners; HIV-prevention and treatment researchers; ethicists and members of health research ethics committees; public health officials, health care providers, and administrators, and others involved in public health programmes; grassroots community leaders such as representatives of nongovernmental organisations (NGOs) and community based organizations (CBOs) implementing HIV-prevention, care, and treatment programmes for people living with HIV, religious leaders, and other community group leaders (youth group leaders, community advocates, tertiary institutions); and other stakeholders such as journalists and religious leaders. Other stakeholders were health care providers and administrators, serodiscordant couples and key affected populations like men who have sex with men (MSM), sex workers and people who inject drugs (PWID).
We then employed several strategies to generate community input and support for the project. One of these strategies was the formative research we undertook using a mix of methods that included telephone interviews, in-depth interviews, focus group discussions, consultative meeting with critical stakeholders in HIV programmes in Nigeria as well as an online survey. In fact, the results of the formative research showed that majority of the respondents prioritized serodiscordant couples as the target group for the Nigeria PrEP demonstration project over young women, MSM, sex workers and PWID and this informed our choice of the target population for the project. Furthermore the stakeholders involved in the research made recommendations on the methods for delivery of PrEP, how it can be integrated into existing health services and how to ensure access to the target population. They also identified several potential challenges that could occur in the implementation of the project. For instance, most of the respondents were concerned that religious organisations would be unsupportive because promoting PrEP would be seen as promoting sexual promiscuity. This in particular was the major reason why during the stage of constituting the community advisory boards at site level, religious leaders both Christian and Muslim, were included in the CAB and trained to ensure their continuing support for the project (because of the large influence they wield in society). Early in the planning stage, our stakeholders and research team were able to arrive at a common purpose for the project. Careful consideration of all the input from the stakeholders helped us understand their different perspectives and values and this enabled us plan more effectively. -
When an upcoming program or clinical trial is announced and later approved, the community through CAB, and other stakeholders /partners are involved from the very beginning . Meetings are held with the different groups as mentioned above,and these meetings aim at synegizing efforts towards improving collaboration, co ordination,so as to achieve the desired overall goal.
At these meetings data on expected challenges as well as how collaboration with all stake holders could yield good results and services to the clients to be dealt with is shared.The deliberations of course then shared with the Ministry of Health being the umbrella of health matters.( *Community involvement is very vital in all the four stages of the program life cycle, that is : initiating, planning, ,implementing,and the closing phase.)