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1. What implications did the inclusion of clean needles in the prevention package for the trial results?
I guess the study participants got confused with the study information visa vie the provision the standard of care to study participants.The study did not provide the clean needles to the study participants yet it is a known standard of prevention among the drug users and the researchers could afford to provide them. The research team would have negotiated with the policy makers to avoid confusing the research community and its stakeholders. At this level of conduct the study was unethical, since it did not follow the rightful procedures which directly affects the final results of the study.
2. How can researchers engage stakeholders to better negotiate prevention packages that combine various arrays of options tailored to the needs of diverse groups?
Conduct consultations with stakeholders at all levels very early during the protocol development process. Research teams should perform engagement activities to seek opinion, make good understanding and trust of the study environment prior to to conducting the study.Researchers should work closely with global advocacy organisations to support them on issues that relate with policy in the country. Engagement should be with all stakeholders and at all levels.
Dear friend Patchara, I understand your concern. However researchers should do so much to support the CAB to be able to provide them with meaningful input on the scientific study. we appreciate the complexity of the protocol but they should endeavor to help them understand. Again, some members on the CAB may have scientific competence and able to provide input on the protocol. so at this level if the CAB is not consulted then, it is injustice prevailing.
Hi Laura, i love your answer for question 2, and how you plan to handle it. However at this level where we all believe that we need to do community engagement prior to protocol finalization, I strongly believe that we need to have a strong move and educate the trial sponsors/ funders that as they start conceptualization of the research.
Advocacy should get to that level instead of providing stakeholders input at the subsequent protocol reviews when the protocol has already started recruitment. Laura i love you submissions!
Despite receiving a complete drafted protocol , at this level the researchers can engage say community stakeholders who can assist the researchers with knowledge that can guide the design and procedures that are acceptable by the community, and the study participants.
1. An example can be the protocol written in a manner where it highlights the specific target population saying ” high risk men who have sex with men, female /male sex workers” However before protocol implementation, the researchers engage with stakeholders who advise them that since the MSM/ and the sex workers are hidden communities and illegal practice in the society where they want to implement the protocol.
The researchers are advised to re-word the statement to read that they are looking for high risk population but targeting the general population.
The advantage to this is that it will not put the study participants at risk of being implicated that they are MSM or sex workers. At this level the stakeholders would have advised the researcher and fed in the protocol development process and changes made.
2. It is quite challenging and true that protocols are developed else where and most times implemented in other countries. So the recipients of the protocols are challenged at this stage how much they can engage the stakeholders on the protocol. However we have tried to involve them especially while developing IEC study materials, recruitment materials, best language to use which is acceptable in the community.
At this note I must say that it is challenging.There has to be genuine justification for why the community and stakeholders at large have to buy-into the proposed protocol for country/community than if it was developed from within.
Hi Pat, I agree with Anne,
In addition we should know that community stakeholders is just a sub set of the stakeholder group. Pat your plan should be developed in away that it includes your key stakeholders in reference to the research at play and they should be able to cover all the spheres of the stakeholders to include; participants, community,broader, national, and global stakeholders.You need partnerships at all those levels.
Patchara I appreciate the way your team handled the two scenarios you have explained, you gave consistent information which addressed their concerns.
Rona the practice of having same consistent information out to different stakeholders is very important. It builds confidence even when the trial results were not as positive as they would have wanted them to be.
Hi all,
I am from Uganda ( still in the developing process), where social media and online communication is still expensive and only accessed by a certain small population of the country.In the community where we carry out research, these two have not affected the trial’s engagement strategies with the stakeholders.They are not not known due to the cost attached to the technology.
True we have experienced unexpected issues at our site;
1. A participant failed the criteria of the trial, and when she went into the community she told the rest that were enrolled that we are giving them HIV and eventually we study it as it progresses in their bodies. She told them that the blood tubes that we use to collect blood have a fluids inside and that is what eventually gets into them through the butterfly needle.
The rumor went wild in the community, participants declined subsequent visits, and we got this information from one of our members of the “special Advisory Group” in that community. We quickly arranged and convened a community meeting to address the issue. Explanations were provided to the members in the meeting, time to ask questions was provided, and eventually at the end, blood draw demonstration was done on one of the research staff on the team in the community.To try and clear the air that the tube contains no HIV.
We learnt that such groupings are important in the community to act as ears of the researchers and eyes in the community to address community concerns as soon as possible.
Hi Team, will not attend the conference, I would have loved but my skills in in developing/ writing abstracts are very poor.Since I have a team of you, hopefully I will be much better.
Rona, I am excited to learn about the abstracts you co-authored, kindly share with me those on my personal email: jnanyondo @muwrp.org at the write time.
Stacey hope to see you soon!!
Thanks, Jauhara
Jessica I conquer with you it very important to have the scientists attend some of theses stakeholder engagement meetings. At the site where I am, for any upcoming research proposal it is the PI to interact with the CAB.In away it builds confidence and the stakeholder is contented that he is hearing from the rightful person.
Anne it very important to have the media at every stage or the research implementing process. At initiation, they play a big role in terms publicity, during the trial as you plan to share updates they take you miles and the results dissemination, and you have them on board you are the winner.
They will speak for you. In short it is crucial to have them on the team.
Stakeholder mapping involves identification of the key and vital partners that you plan to work along with to execute the research intended for the country. It is done by stratifying the stakeholders in terms of geographical location. As you do the mapping one should factor in the 5Ws to include, who should I have on board, when, where, what, which and how. As you build flesh on the 5Ws, you will have a good plan for the stakeholders.
We should appreciate that stakeholders vary by trial or research however sometimes you may find that some of the key stakeholders have not changed.
We should appreciate the CAB work is voluntary so to have someone represent a certain constituency, it requires that person to be willing to commit time to CAB work. Someone willing to work without pay! Specifically for recruitment of new members recently I have been involved in the same process and I the following process was done.
As research team we did some literature search on what groups of people are represented on the CAB. We developed a list. Then we identified organizations or leadership structures, or groupings that we thought we would engage in form of talking to them, or writing to them to help us identify the interested party.
From there we do the research literacy training to build the knowledge of this new member.
Members are informed the participation is voluntary. This team is composed of 10 individual, however it is a small team and this is due to financial constraints. If resources could allow may be we would have a larger team.2. Through our CAB, we penetrate community spheres through the current team that we already have. They introduce us into the community and other community representatives that are required. Sustaining this stakeholder engagement relationship requires a lot of effort in terms of planning, organization and resources.
A dedicated staff to have a smooth flow of this process is required to organize, facilitate, and keep in touch with all required communities.
To have the same commitment from the research team, the outreach team has to be very creative in developing engagements that take through/ train the research about the importance of stakeholder’s holder engagement.
Share with the research team scenarios that happened to the researchers who never involved the stakeholders in the whole research process.
Remind them that whatever they are doing is of for the community, there for the need to engage them before, during and after the trial. A sustainable relationship require transparency in terms of communication and mutual respect of all parties. These two will result in trust which keeps a relationship.
Hi Marie, I will be very excited to look at the tools, I hope the training administrators will support us through this. It is an opportunity for some of us who feel we need more to be done in terms of stakeholder engagement to have interface to do so much to improve our engagement efforts.
Rona, all the efforts you did while developing material for the intended / target population was all formative research and it was clear stakeholder engagement efforts despite not being a research setting.
Nondo I agree, when researcher’s don’t effectively engage the community or stakeholders, they should think of facing hardships in penetrating the community. That will most likely lead to resistance and eventually failure of the study. It is hard in this situation to have a plan B, succeed in this kind of set up.
Marie says better engagement for the study means success for the study, i totally agree with her statement. At this level anything that comes up from the community or other stakeholders is handled on time and mutual understanding promoted.
In my country it requires IRB approval for formative research, and the approval process is not short to allow processes move faster. So we prefer using informal ways of doing formative research.
We have also done a rapid survey, before, the trial to assess acceptability of the planned Ebola/ Marburg trial. All these are forms of formative research.
