Forum Replies Created
-
Replies
-
A focused workshop where you discuss the topic with your community stakeholders, you will be giving and receiving. you empower them with examples to motivate their understanding and they will “vomit” plenty examples of scenarios. well if they are new CAB members for instance, it might take some time before they can be able to provide critical feedback, therefore ongoing capacity-building trainings are necessary if they are be enabled to respond to the challenge.
they live with their people, they know their community and what has always happened, so they will definitely come up with ideas from previous experiences.
If I understand the concern, it is about the relevance of GPP in phase IV processes? I do believe that GPP is designed to assist in all the stages of a clinical trial for as long as there will be a need to enroll participants, to engage community and other stakeholders and so on. we all seen clearly how a well planned GPP plan may help avert a lot pressures, tensions and difficulties around a given trial.
It’s about how you design your plan to fit your target groups and the objectives of your particular trial I think?
Hi Erikan,
Just like my two colleagues up there have shared, I found this online course set-up very well organised and exciting, as I said at the HIV R4Prevention conference. I so loved the modules’ powerpoint set up and narration, the visuals… case studies and short activities were awesome too.
I found the knowledge checks to be well balanced and I often easily responded. yeah there were times when I failed two questions and had to revisit the content, like once I decided to go all the way from the begining of the entire module narration before coming back on the knowledge check. I did this because I kind of disputed the alternative answer you provided to the two questions. fortunately I can not recall which module it was!!! But I think I eventually bought in your version. lol.
Scenarios were very well designed to match the topics and its contents. I enjoyed.
The interaction I saw through the discussion forum was great too. I got to learn a lot from experiences shared by colleagues in other parts of the world and I shared my own this side. the discussion forum in my opinion made this online course even more alive and brought a very important component to its learning purpose.
Work assignments!!! I first struggled to upload my very first and second work assignments and I thought everyone else did too. so I thought if it’s a general challenge for everyone then the administrators will just take this “work assignment thing” away!!! well it was a way of provoking us I think, and I lead to me going back all the time to RC colleagues to check how much I have done in terms of educating them on GPP related work and how much they know on what is going on with regards to GPP! I can’t wait to finish all my asignments.
All in all thanks a lot guys for putting this course together. your contents, visuals, narration and other used strategies just worked very well! I hope the next generation or intake will benefit a lot building on our first experience.
Also at my site I have set up a social support hub where staff members and other stakeholders donate (have donated) clothes, shoes, blankets and important stuffs to assist our participants and other community members who are victims of common local disasters like fire and floods. people in this crowded community often misconnect their electrical appliances or leave them plugged in hence causing the “usual” fire disasters that destroy hundreds of shacks/homes in the township.
This has become a way for us as a research center to connect with our local trial community beyond research specific purposes and ensuring that rapport is built and trust is established between the RC and stakeholders.
All said! well I appreciate stakeholder/community engagment as it gives a sense of true care from the research team, and not just a lucrative project that is using the community support to get to their end. the community sees and appreciates the tireless efforts by the research team to reach out to them and the consideration given to their inputs and recommendations. they see and value the consistent follow from the research team, the capacity-building strategies provided and they realise the significance of the projects and therefore own them. once a research is owned by the community it’s a great success regardless of the final resuls of that particular study. they will engage, get involved, support it, defend it and make it work.
I so liked what CAPRISA did, it’s like what I heard from another research centre in Madibeng here in South Africa, they went beyong engaging the community on HIV related education only, but reached to larger stakeholders and established bigger networks and supported communities in other critical needs. that just touches any community!
beyond and in between trials I have partnered with stakeholders to host key events (mini and big), I have ensured visibility in the community. commemoration and celebration of key dates brings together the community. community dialogues, FGD have also helped to stay in touch. the CAB is always engaged.
On the impact of not including clean needles in the HIV prevention and risk reduction package, I think trust brewakdown is highligthed. community stakeholders felt used, and not heard when they could not see incorporation of their inputs/suggestions.
national stakeholders engagement is key in discussing these kind of issues as they will gain clear understand of realities of especially key population, and ultimately open up to suggestions.
Enough funding and time need to be allocated to programs which aim to educate key stakeholders as part of advocacy strategies to address some discrepencies in local laws and policies. And ensuring that stakeholders engagement is ongoing will help to keep an open communication.
Clinical trials need to be complimented by strong advocacy work at all levels: community, local and national (global too) to address some of these critical issues and challenges.
And just to add, in instances where CAB members have to go through a finished protocol, and where they are anyway happy with what is drafted, “we” as the stakeholders engagement officer have always ensured that they get to help design other important researh tools such as study specific posters, flyers and other promotional and recruitment materials. they are nevertheless actively involved in the strategic planning for the conduct of the study, including recruitment and retention plans.
Sometimes it is about being flexible but clever with how do you use the opportunity to make up for shortcomings.
I agree Jauhara, I wish one day we get to that level. I stay positive that all start with discussions like these, and our own implementers feedback and consultations with protocol designers. but sometimes when we receive a “done deal” protocol, we still go through it with CAB to see if there any objections anywhere and collect their inputs or suggestions as needed. if the protocol looks great then we are all happy because that is what we wanted anyway. the CAB discusses the already developed protocol, understand and own it afterwards, so as to then be able to tralate it for the community.
ICF used terminology often gets CAB feedback/inputs. so CAB members often have the platform to discuss the ICF and bring their inputs forward.
I liked the fact that the invitation to take on the GPP course was extended to various RC staff members at the HIV R4P conference. to avoid time and responsibilities conflictsat the RC level, all staff need to at least understand GPP guidelines and their significance and importance, then the staff member responsible for its implementation will allocate enough time and commitment to it without problem. problems come when others don’t understand the why. stakeholders is very critical in the research field, so we’ve got to train our own staff members for a better understanding of GPP guidelines.
With social media you kinda loose control over who is who and who is responsible for what. anyone can just write whatever they want to without following the site protocol or communication plan. it can be a great tool to utilise for communication and even education, recruitment and retention, but if used carelessly it cause damage!!!
Obama visited South Africa and his meeting with key stakeholders was held at our site in Masiphumelele, and so they were rumours afterwards about his visit and how he brought money in bags… some folks rushed to put it on the social media. so we had to respond on the same platform and quickly invite community stakeholders to meet us for furtherdiscussion and clarification on the matter. we had an urgent RC meeting to revisit our communication plan and come up with a turn around plan. A community meeting was called where we clarified the Obama visit and the why community members were not invited to meet him (some young people attending the Desmond Tutu HIV Foundation youth center were invited though).
