[Micky Hingorani]

Community service protest is our main problem in the community, few weeks ago we had a protest that lasted about 2 weeks. roads were closed even if you had your own transport to accommodate participants it was difficult to reach their households. In situations like this the main concern is participants we need to think about their safety first as much as we need them to attend their visits. we do engage with stakeholders because they inform us when the protest is going to take place and how long is it going to take. the Mayor usually meets with the community and come up with the solution and how to meet the community half way.

[Micky Hingorani]

This is an interesting scenario. If you are aware there will be protests or, for example, an annual ‘strike season’ in your setting, can you include this in your scenario planning with team members before the trial begin–in order to analyze and prioritize the issue a but more? For example, do the protests threaten the research in any other way, besides pushing timelines?Are there safety concerns for participants, for example? Many events like these can be managed with good planning or even turned into opportunity.  In one my trial settings, we actually used community protests as an opportunity to engage our media outlet!

[Micky Hingorani]

gender based violence in our community are reported to the police. though most of the cases are not reported, some victims feels it is family matter, family members intervene. however the bottom line is that most cases are not reported.

[Micky Hingorani]

Hi everyone,

Describe a benefit that you have experienced of conducting stakeholder engagement. For your example, list a measurable indicator or metric  of success.

one of the benefit that i have experience with stakeholder engagement was when we straggled with partners of female participants. female participants had problems attending some of their study visit.

We partnered with organisations that work with men and invited the police. we organised games, spoke about research and community involvement and police spoke about crime and their need for community support. from that community event we experienced a higher number of males who participated in our research studies. We had successful events were participants invited their partners to our site.

[Micky Hingorani]

Hi everyone:

your feedbacks and examples are extremely valuable to me (working at a global level): your examples and experience enhance my understanding of the many local challenges you are facing.

I also have a question for you: per GCP guidelines, subjects should not be coerced to participate to a study. In this light, have you ever faced concerns (eg raised by Ethics Committees) around offering HIV preventive methods by a study sponsor? If so, how have you handled this situation, any suggestions around framing/ communicating this topic to ECs?

Look forward hearing from you!

[Micky Hingorani]

Hi Heidi,

We actually have the opposite situation with our ethics committee. They request sites to provide adequate preventive methods for HIV vaccine trials participants. Their biggest concern , I believe, is how the site will ensure that participants are still able to receive adequate preventive methods after the end of the trial. One way to go is to provide methods that are available in the National Health System, that could be reached by the participants after the end of the study.

Regarding benefits of conducting stakeholder engagement:

Once, we had a rumor about buying blood in one of our studies. Some participants had the impression that the compensation given for transportation and for the time spent on the research was actually to buy their blood and the rumor was quickly spreading within the community surrounding the site. We immediately asked for support from the CAB that was well informed about the study and the reason why compensation was given. Our CAB, together with the site, actively engaged in establishing meetings with local community leaders to explain reasons to compensate participants as discuss strategies to revert the situation. Some of the suggestions were to have forum discussions with participants, others were to discuss within local community meetings. After a couple of months, trust was rebuilt. This could not have been achieved without transparency and mutual understanding between the site and stakeholders.

 

[Micky Hingorani]

Lesson 2 module 2 assignment is challenging and technical I plan to spend more time on this topic to fully understand. I  have learned that we have not been engaging stakeholders in systematic ways going to them only when we need to recruit participants for our protocols, hardly involving them  early in the process. We have engaged stakeholders previously to address challenges that have arisen which is fire fighting instead of fire prevention. One of the challenges that will need to be addressed is having adequate budget for stakeholder engagement to create a supportive environment for HIV prevention research. This training is critical in improving our stakeholder engagement, I am happy to have enrolled.

[Micky Hingorani]

In Kenya gender based violence is common mostly against women and in many cases go unreported especially rape because of the stigma this causes. In  instances when reported it is sometime resolved traditionally with the father of the girl being paid so that matter does not proceed to court as the girl in most cases a minor being forced to withdraw the complain. The slow court process also frustrate efforts to seek legal redress since the case can drag on for a year! Few cases of violence again men are now being reported especially extreme cases of wives chopping off genitals of their husbands. this tend to attract sensational  media attention and cases against the women tend to be attended to faster

More organizations dealing with gender violence need to come up to ensure young female victims of GBV are not coerced to withdraw cases and deterrent punishment meted out to offender, with the media support in disseminating such efforts .

[Micky Hingorani]

Lesson 2, module 2 assignment was challenging as it required analytical skills and time to complete it. I may need to read the sections again to improve my understanding of the principles and scope of GPP.  I look forward to the webinars where we may discuss the principles and section three. Thanks for the great module explanations.

[Micky Hingorani]

Hi This is very interesting about the stakeholder responsibilities in our different research sites, this group can influence the community understanding as long as they are involved throughout the trial.  I have leant that educating them about the research to be done and involving them with getting information of what the community say, think and know about research matters.  Without involving them can mean not education the community in whatever you want to research.  Remember that you will work with the same community.

[Micky Hingorani]

For me, the benefit of stakeholder engagement has been about teaching the community about HIV research. I have found that even though knowledge does exist in the community, more still needs to be done in reaching other communities and spreading the word about what we do to the communities. I have found that the community is dedicated to finding other forms of HIV prevention and want to be a part of the solution. The more we do community engagement the more we are able to dispel myths about HIV and research and thereby create a transparent environment and reach mutual understanding in the community.

[Micky Hingorani]

Goals; Intended achivements at the end of an event or activity.

Objectives; Reasons why an event should take place,given a specified time frame.

Activity: A planned event in action.

[Micky Hingorani]

The module has helped me understand the differences, i think i can now be able to write up a very good proposal. I got to understand that goals are the big picture that one should look at when engaging stakeholders, objectives are the specific results out of stakeholder engagement, and the activities are the different actions you put together to achieve the objectives and goals.

[Micky Hingorani]

Thanks for all the responses which are very educative, what about in instances where police does not address these issues reported directly to them because of their corrupt tendencies? let us put into consideration that cultural traits also cause SGBV, therefore there is need to tap into the root causes of SGBV which is becoming one of the HIV pandemic drivers. How do we uproot the real causes and address them with the best interests of the communities at the center?

[Micky Hingorani]

The module refreshes our thinking on key stakeholders who can greatly influence the trial. It is a pointer to respecting the different set of Research principles not only for trial success but also for volunteer protection.