Lesson 9 Discussion Question

[Anne]

CAPRISA’s comprehensive approach contributed to their success and network of relationships created over time. How is your team sustaining the commitment and motivation of key partners and community stakeholders after and between trials?

Topic

[Zithelo Prince]

We donate clothes and food parcels on a yearly basis on Mandela day to local orphanage homes.

[Carué]

The trial I am working in is the first to have community engagement for a while in our site, so we are rebuilding the Community Education here. Although we have specific goals for our Community Engagement Plan that are related to the trial objectives, I try to balance short and medium term objectives, like starting recruitment with full intensity, with the broader, not study-related goal of building a long term relationship with the community, even if that one sometimes seems clash with shorter term aims.

[Dana]

TB Alliance recently finished a trial and is now in between trials. The focus of our programs this year is results dissemination and general research literacy. Even though there is not an ongoing trial right now we want to sustain the commitment and motivation of key partners and community stakeholders through education on TB and TB research to prepare them for upcoming trials.

[JORGE]

Being my first experience and not have had a remarkable engagement in the trial process, we are trying to build alliance with other stakeholders for the best outcomes in these studies’ implementations and also to continue advocating for PrEP access together, as community and other societies, scientific groups, etc. This will have a bigger power and it has more motivation specially for us, as community members, because our voices are raised up in these meetings. Also I’m trying to manage fluent communication with stakeholders, also sharing information and involving them in other moments or steps related with the trial.

[Cale]

Engagement efforts (and funding to support those efforts) are usually tied to specific protocols (and protocol funds), which makes the type of comprehensive engagement detailed in this module challenging. After and between trials though, CAB activities are still supported and this does help to sustain the commitment and motivation of these community stakeholders to some extent.

[Carué]

I feel the same here, but I think that even inside the frame of a trial-specific community engagement program, there are objectives and activities whose consequences go way beyond a specific trial, like research litteracy or PrEP education, and building relationships with CBOs.

[Maurice]

We are obliged to encourage the involvement and commitment of community stakeholders and the rest, we must keep them informed of the follow-up of other programs: training or retraining of stakeholders, protocol or contract development, signature of all Documents that proves the partnership on each test case for clarity. Here, the action is uninterrupted by the alignment of the other team members to the program and the separate case study according to the test sites.

[Zoleka]

Morning Anne, In my site we have not started but the ones we have now I know that we will keep them posted about every scientific agenda regarding this community and invite them for seminars that represent the new development in every study conducted in our trial site.

[Alicia]

Will you invite them to add their input regarding the development of the protocols for each of the future studies as well? This would probably be helpful as well. Who you will invite, however, will depend on the target population for each trial and the stakeholders’ expertise.

[Alicia]

A number of our trials overlap in timelines, therefore, it is a continuous interaction with our key partners and community stakeholders. However, of course it is important to keep those relationships fresh and up to date (introduction of new team members, etc.) as well as continue the open conversation between study teams. As we are all using similar sites (some are the same) it is important we keep each other updated on the activities, barriers, etc. occuring in each of our studies.

[Greer]

This is also similar to my experience where the respective research centres can have a number of parallel programmes. These do vary from site to site, but the majority of research centres have been established in the communities for some time. It is not something I had approached as directly before doing this module which has given me some food for thought as it should also apply to strategies being used for engagement activities that are taking place now.

[Author]

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