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The course broaden my mind to effective stakeholders engagement. GPP has helped in our communication design. We are able to design an issue management plan for our study.
The CAPRISA approach built trust and confidence of the study population, this helped in the recruitment and retention of participants in the study.
Our site carried out a HIV study in a community and as part of their contribution they noticed that they community had scarcity of water. They provided a borehole water for them. That really made a lot of difference. During the planning stage of the present trial that we are carrying out, we were to the community and they were very interested and have been taking part in the trial and have been coming for their visit.
<span style=”line-height: 1.5em;”>1. The research team would have meeting with the CAB and a also implement the issue management plan. Work with the Human right advocate who is a member of the CAB on the best way that has been agreed to handle the issue.</span>
2. During the planning stage trial site should be assessed. Key opinion leader in that community should be engaged as well as MSM union leaders. They can discussion all the social harm that the group potential harm and the way the community perceive some social issues. Based on that the issue management plan should be developed with the inputs of these community stakeholder. A member of the Law enforcement agency should be a member of the CAB, they would handle any gender violence with advocacy group.
The trial Participant in Biomedical HIV prevention trials should have access to the higher standard of prevention and care. This is so as to get a quality data without issues of legitimacy.
<span style=”line-height: 1.5em;”>1. The lack of clean needles in the prevention package for the trial site led to not having full prevention package for the trial participants which was not ethical, it led to conflict between the civil society group and the researcher. The result of the trial was good but due to the lack of clean needles, there was issues surrounding the legitimacy of the data collected.</span>
2. The researchers can involve the stakeholders in Protocol and Informed Consent process. That way they would make their inputs which will be diverse as these stakeholders can bring up issues that are relevant to the implementation of the trial. Stakeholder education is also of importance. They would need to be informed and educated during the course of the study.This would help to mitigate any form of conflict caused by misunderstanding.
1. In our site during the stakeholder engagement meeting, the stakeholders brought up the issues of exclusion of people who were sick with HIV, Hepatitis and diabetes. The result of stakeholders being involved was in the inclusion of people who had well managed form of HIV, hepatitis and diabetes. During informed consent process the protocol states that the men taking part in the study should be asked if their female partners were get pregnant. That was amended and that was excluded.
2. The relevant stakeholders should be given time to make inputs in the study and also there should be transparency and communication during the study. Technical parts should be explained to the stakeholder.
Social media has not had any negative impact on the study. This is because we have not use it. But we still monitor it to be on top of any issue that might raise.
But it has helped in a way because during the stakeholders meeting when we give updates on progress made in the study, some of the participants comment that they read on the internet of watch the news that the vaccine has shown potential for a 100% protection. This gives our study credibility.
1. During the Ebola trial planning stage, the team identified the target population, based on this, we identified individual that can link us to the targeted study population. Advocacy visit was paid. Usually during these visit we prioritize the people we met based on their influence. We engaged them separate by educating them about the trial especially when we perceive an opposition. The CAB members were essentially made up of community member and opinion leaders. Religious leader representing the two major religion in Nigeria Islam and Christianity were selected, media experts, representative of the community that was picked out for recruiting volunteers as well as legal expert.
2. For the CAB members, weekly updates are sent to them. They also hold their meeting quarterly which is funded by the research. But from the planning stage, all the stakeholders engaged are mostly people who a member of the team know or the stakeholders engaged recommended. So to some extent they are people who are ready to volunteer their time and resources without expecting anything. Because they are not expecting any incentive they work with an open mind. This encourages sustainability as there is constant updates of what is happening. They usually nominate a member to visit the site.
As a research team, adequate plans has to be made to at least make a difference in the life of the stakeholders, it could be inform of education, information or provision of some facilities. For instance,a community that was engaged during a previous research is so eager to volunteer for this study because the research team was able to sink a borehole where the community can fetch water from. This has made that community research conscious.
I agree with Dr Terfa. Formative research and community engagement are linked, be it formal or inform. They both help you to plan for the trial.
The benefit I have experienced from stakeholder engagement are trust and mutual understanding.
In the process of Key Message Development, stakeholders were invited, some stakeholders from an organisation that we partner with, did not show up even after invitations was sent severally to them.When the final draft of the message developed was sent for approval, they rejected it without looking at it. The community engagement team paid advocacy visit to the Director General who was the head of the organization we were working with. When we got there, we gave updates on the study and other activities, leaving the rejected drafts for last,giving him the materials that were developed. After looking at it and asking questions he approved that the drafts can be printed as our key message for the trial. This was March this year.
In my community, it exist, but it is not done opening. It’s mostly the case of peer pressure, youths feel the need to belong to a certain peer group and are willing to do anything to be associated with these group. If they fell into the wrong company them it becomes bad, as they have to take part in negative activities for them to be considered a member of the group.
One of the ways to reduce drug abuse among the youths will be to engage them on creative activities like dancing, singing or sports club. This way they are occupied, there by reducing the chances of engaging in these vices.
The uptake of PMTCT is very high. This has been because the primary health centers were empowered to proved prophylactic service to women who come to ante-natal clinic.
Stake holders may feel left out in the process, this may prompt them to oppose you in the course of the study.
Action- will be to send information on all that has been done, explaining every step that has been taken and reasons why. Through transparency, trust can be built.
To what extent does the research team with whom you work have an understanding of the value of stakeholder engagement? Explain your answer.
The research team in my site understand the value of the stakeholders as they are involved in stakeholders meeting. But they do not have a broader understanding of who a stakeholder is as has been explained here.
The CAB meetings are well attended. This is because the CAB is independent with an elected chairman and Secretary. My team only fund their meeting. They have been able to make great inputs like suggesting the other stakeholders that needed to be engaged. One of them suggested the provision of a toll-free line through which the team can be reach by the study participants.
