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Yes, I learn a lot. Now I know that any community engagement activity must be participatory, prioritizing stakeholders concerns, before I thought the research team can make decisions and impose it on the stakeholders without asking for their inputs. The surprise I got was the positive and meaningful contributions that some of us would not have thought of we got when we had a brainstorming session on how to recruit for our up coming trial with some stakeholders.
We make our presence felt in the community and that makes the stakeholders have sense of belonging. We also engage stakeholders on the issues that relate them using GPP principles.
For me using GPP for referral should be done with caution bearing in mind the stigma attached to HIV and its treatment, in the GPP forum the importance of good health should be stressed so that the referred place their priorities right.
In addition to that we use home visits and questionnaire and we see positive results from using all the tools / strategy.
As the PrEP trial in Nigeria was suspended, Truvada is used for only as anti retro-viral therapy in our clinics.
We continue to interact with our stakeholders through visits, phone calls even stakeholders we worked with past years. We hold CAB meetings quarterly and hold meetings with other stakeholders. My organization sank a water borehole in a local community their members were participants in a research that had ended. We still visit that community and some of them volunteered and are participating in the on going trials we are doing now.
The research team representative should visit the night club and hold meetings with them explain what the study is all about. The team will also ask the club owner to invite their key stakeholders to a meeting where they will also explain what the study is all about. The safety of the participants who are their customers should also be emphasized.
The protocol content should be explained and interpreted to all the key stakeholders. At the planning stage the research team should engage night club owners as one of key stakeholders, human right groups,other relevant stakeholders , brainstorm, deliberate and discuss the study that is about to start.There should also be regular meetings with all the stakeholders for continuous discussion concerning the study till the study is completed. The safety of the participants should be guaranteed at such meetings.
As the trial has no ethical obligation the result will not be authentic and reliable. The data will not be accurate and it will not be taken into consideration as it should have taken while analyzing.
Researchers should involve the stakeholders from planning to implementation stage with regular meetings, focus group discussion, brainstorming and deliberating on how to make future trial ethically balanced. Some members of the diverse sub groups should be part of the stakeholders so that there will be positive communication on including necessary requirements like comprehensive prevention package, etc in order to make the trial safe for the trial participants.
In my team we have a stakeholder engagement group but the PI encourages every member of the research team to support the stakeholder engagement group so all of us in the team join hands to make our stakeholders happy though the budget is not robust.
In my opinion GPP should be in mind of any researcher when trying to start a trial no matter how small the expected population may be. At the planning, implementing, scaling down stage and even at conclusion GPP should be in place .
When a protocol is sent to our research team, with some key stakeholders we go through it page by page and line by line then we make changes by removing or adding in a way it will suit our population. Our community stakeholders will also go through and understand the contents.
We do not see any protocol sent to us in a final stage we always make an input and there must be an amendment to any protocol before and while implementing so nothing like final form.
It is only bulk SMS that we use to send information to our stakeholders and our trial participants for their appointments.
As we are planning to start a clinical trial on another Ebola vaccine, we tend to have a meeting with our CAB members to discuss on the other stakeholders we will involve and how to go about it considering positive or negative attitude people may have regarding clinical trials. We conducted survey on our trial participants and their response geared towards working with other stakeholders. We are doing this because the trial participants will be different from those who took part in the on going trial so we need to involve different stakeholders.
In our previous research on HIV related issues we had different stakeholders because we covered all the geo-political zones in Nigeria but when we started clinical trials we selected the stakeholders within Abuja and environ since the clinical trials are taking place in Abuja and we involved them in the formative rsearch
