Community Represantation

Hi Isaac

I understand your point but I see it as part of their engagement in the community and our CAB is voluntary but we reimbursed them for transport.

Nokulunga

there are different NGO”s in the communities if the CAB can work together with them it
will inprove patient participation in the research and will rule out the negative about research

Hi everyone

Wendy’s question is very important because most of the sites have the same problem. I think the way to encourage the CAB members to give feedback to the community is to set a target to each member to organise 2 groups in the community every month and give feedback in every meeting and site staff should attend those meeting to give support and this is the way to see this groups are being conducted.

Many Thanks

Nokulunga

Hi Everyone-  This discussion of the role and composition of a CAB is very interesting!  I encourage you to bring these discussions into the lesson 2, 3 and 4 forum discussions. This conversation will only be enhanced by the module content.

I encourage you all to think about Wendy’s question of how to monitor a CAB’s composition and if it reflects the community. It would also be good to focus on what the CAB’s role is. Is the CAB an engager, meaning that they may go out and engage with communities on behalf of the research site, or is the CAB another mechanism that the site uses to gain insight from the community? It would be good to get clarity on what each of your sites consider the role of the CAB in future threads.

Hello Isac,

I agree with Mark. My main concern about the CAB is that, even when they are good representatives of the communities involved, they cannot be the only reference of the communities interests and expectations, because there are a lot of voices we are missing, and they cannot talk for all of them for obvious reasons. To my mind, applying focus groups, community forums and surveys are the best way to ensure and prove that we are actually working for listen and respect a community voice. Of course, this would be a tool to complement (and never replace) the work of the different CAB’s, and it can even be use as a guide for them, in order to best represent the voices of the communities they represent.

The information obtained trough this methods could be significantly important to represent a research communty. So yes, we need to focus on function rather than anything else, in order to achieve our goals.

Great thoughts

I want to agree with some earlier speakers when they talked about the consistent of CAB members being diverse. I think Identification of CAB members is critical as this will determine their influence in the community. CAB members should be diverse in their social status and should also be representative of the recruitment sample if they are to have an impact on the study’s life cycle.

Joyce.

There is no substitute for community representation, The groups may have different names but there principal is the same: they are stakeholders from the community who represent the larger community. What we need to be aware of is how well this smaller group is representative of the latter. It would be pointless to have stakeholders who do not represent the bulk of the local community yet speak on their behalf. I must say I am impressed by CABS, because their diversity is such that discussions are so robust and motivate people to want to keep on attending. I sometimes feel bad when a meeting has to be cancelled because members are so eager to attend.

Very nice topic,

I agree with Bernice and Jessica that,  what you call it is not important but How the group work is important.

Hi again

I just wanted to find out ways in which you monitor that the CAB / CAG really represents the community and that they are giving feedback to the community. How can we really choose people who will have the communities best interest at heart??

Hi all, I am already learning so much from you guys. All my questions are answered in advance….

Dear Colleagues

Yes, there are various ways to have an extension of CAG such as working with advocacy groups and community networks in and around where trial is conducted however this different structures should be grounded and have been taken through GPP and GCP so that they understand pros and cons of the clinical trials. hence working through CAG is more instrumental because is systematic.

thanks
Moses (Known as Lucky)

I feel that different bodies of community can be more effective than others depending on the task at hand.  CABs are often times well-versed on the the clinical trial process, so generally understand what would feasible for trial sites in carrying certain recommendation.  CABs are often times diverse, at least in my experience, so advise may be given from people that are not necessarily from some study target populations.  Hosting focus groups can be highly effective, if advise is needed from a specific target population in greater numbers than what you may find among your CAB.

These  are  wonderful  discussions  and  i love    the  learning. My  worry though  is   on what exactly   we   mean by Community?  who is this  “community” in   either the CAG or CAB. What constitutes  or what should  constitutes  that which we  refer  to as the  community  for  a CAG or CAB  to be considered  a fair representation of the community?

Team, Please  help in dissecting  and responding  to  this   confusion i have.

Hello everyone,

Very nice discussion on CAB/CAG. I am so much encouraged. I agree with Mark’s and Jessica’s comment Most important is group function, I also agree with Bamidele that through meeting every issues should be sorted to reduce the attrition and promote synergy between CAB and community.

Thank you

Mahesh

Much has been said about CAB or CAG as an interface between the research team and the community. However, to function as an interface, there is a need to properly define their roles. viz – a viz, core function and oversight function, which should be guided by a global or regional goal, stratetgy and principles but with adoption based on the local situation of the clinical research sites for instance of the region as a whole. Issues of compensation or payment or re-imbursement or logistics need to be sorted out through meetings to reduce attrition and promote synergy between the member and the research team and between CAB and the community.

Bamidele

These are quite interesting discussions,they are  very educative. My take on this is that CAG/CAB if well constituted is a good representation.However other groups can represent a research community even better.For example, I have seen some interest groups such as community based organisations( civil society) for sex workers have a big stake in research involving sex workers.

When  well engaged, the interactions have been very productive.In my opinion this does not replace the CAB/CAG.

Such groups have roles in ensuring the participants understand their roles in a study.Ensure the participation is voluntary and also help the community understand the need for research.

Regards

Michira

Community events like sports competitions is another good way of creating awareness about project purpose and goals amongst the would be participants in target recruitment areas. Its another way of bringing a vast number of stakeholders which opportunity is very ripe for disseminating vital information and facts about the real intentions of the project.

Isaac,

A CAG is a community advisory group.  It is one way to refer to a CAB or it could a separate body that comprises just the target population. For instance you might have an MSM community advisory group and a community advisory board. The differences are very subtle. I just want to bring Mark’s comment from earlier into the mix again. It doesn’t matter what you call it, how the group functions is the most important.

In the course we will emphasize the different ways you can reach out to populations. Sometimes the key is not to target them directly but to try and include allies. For instance, if you are trying to target young men you may want to reach out to local athletic club leaders and parent groups. I think this is a very interesting thread and I’d excited to continue to learn what others are doing!

Hi Isaac,

At our Research Centre, we’ve tried to create a CAB/CAG that represents the community, by involving different gender, age, organizations, professions, etc. But a CAB/CAG can only be a good representative of the community, when it’s created in such a way. Important is as well that the CAB/CAG should be an active group.

Kind regards,

Ndlovu Care Group Research Team

Hi Isaac,

Community engagement as related to research can be successful through many avenues, in addition to what Mark wrote one on one discussion with stakeholders and exit client interviews are also useful in research.

Thank you,

Anthonia

Hi Isaac,

I think there are a number of ways that community can be engaged related to research. A community advisory board is one. Focus groups are another. There can also be other kinds of processes like surveys, discussion groups face to face or online, and public community forums. I’m sure there are others. Each has strengths, weaknesses, opportunities, and challenges. As we become more experienced and knowledgeable we hopefully can be more skilled and strategic about choosing.

Of note, naming a group a community advisory board doesn’t mean it functions well as one – so what I think we really need to focus on is function.

I think it depends on what you see as the need.

Just one person’s opinion.  Great question.