[Micky Hingorani]

What surprise me from the learning on this course is about ISSUE MANAGEMENT. In our design of research implementation plan, we never thought of documented approach to handling conflict through an issue management. We rather focused on conflict mitigation which has helped prevent any major issue. I now know better that we have to plan for these unforeseen events if they does happen.

[Micky Hingorani]

This is just for interest sake, in communities where research is not accepted at all, even when you try engaging with stakeholders from different levels but they seem to be not interested. do you continue with the trial hoping that some of the community members will end up understanding the research? If yes, how sure are you as research team that those communities won’t have impact on other communities when the studies are conducted in the those other areas?

The course was very interesting, eye opening and there is still more that need to be done on our side. I have learned that engaging with community stakeholders does not necessarily mean that they will all support and accept what we are doing as a research but keeping things transparent is the key, respecting and understanding the community from different levels can help us getting where we are going quick and easy because in that way we will be travelling on the trust of one another and lift each other up along the way. GPP Team, thank you for your patience, dedication and always willing to assist.

[Micky Hingorani]

Erica i couldn’t agree more.. Food for thought 🙂 🙂 🙂 Thank you Anne and the GPP team 🙂

[Micky Hingorani]

1) how do you engage with schools? consents? time? after school not possible.. – Topic adolescents in care at youth friendly clinics

2) i have learnt GPP, i understand GPP and im a proud owner of the GPP guidelines.

My knowledge has drastically grown and i can now apply GPP.

i feel confident working at trial sites and knowing exactly what is going on and where 🙂

 

[Micky Hingorani]

My understanding of GPP had dramatically increased since the first lesson, I have leaned a lot , i can not explain it all but generally there new things that i have learned through the course, though some of the things i used to do them as part of my work but i did not know that i was actually applying GPP principles for instance  conducting small discussions with  5-6 key stake holders in a certain study to try find out any anticipated diffiulities and opportunities, i now know that this is formative research activities. Additionally now I have the capacity of explaining to the PI and other research team members  the four quadrants of engagement, who to involve, to partner, to collaborator and who to inform this is one area that surprised me, We used to engage stakeholders at different levels but, it never come in my mind that Stakeholder could be categorized beyond their levels of leadership in the community and my be closeness to the trial participants/target group.

I would also like to take this opportunity to congratulate and thank the course organizers for a great job, it is a very fruitful course.

[Micky Hingorani]

The biggest issue that I have is how to engage with to engage with Government Officials on issues that are against the laws of the Country. These are issue that criminalize MSM. How do you ensure that you do your work without getting into conflict with the law. Furthermore, how do you engage with religious leaders who in most cases are against such issues? How do you make them understand the need to protect participants from such background given certain barriers from various stakeholders?

[Micky Hingorani]

I think CAPRISA succeeded because they were well resourced being able to address community needs obviously endeared them to the community. Did they include non HIV activities like building school, teachers houses, and feeding program in their initial stakeholder engagement budget or it came up as an emerging issue and they requested  a supplementary budget?

In  our site  sustaining support groups after a study is difficult because travel reimbursements  for members stop when the protocol follow up ends, usually because budgets are limited to a study lifespan. However stakeholder engagement especially the CAB goes on because ongoing studies support their monthly meetings.

Broader stakeholders are engaged during our HIV vaccine awareness days on May 18th usually attended by former study participants among other community members and  and WAD days on  01 December

I have now learned that innovative ways exist of leveraging on other stakeholder events to sustain relationships in the light of limited budgets so that one can keep broader stakeholders engaged.

[Micky Hingorani]

Hi Alice, In my site we work with women at high risk for HIV infection (women who hanging around  bars, night clubs or guest houses trying to get sex customers) is a cohort of more than 500 women, we try not to call them sex workers since it is illegal in my country.   We started by sending some staff to their spots/ stations where they hang around while waiting for customers/clients, they give them an invitation memo/card for a meeting  somewhere in town to discuss some health related issues.  In the first meeting we were able to meet with six women who are sort of leaders in different waiting spots, we engaged them and discussed our project,  then we invited them at the clinic for information seminars and details of the study.  From there we were able to enroll the women in the cohort by using snow-bowling or respondent driven sampling, where these women/girls were bringing their work mates at the clinic.  Therefore i would advice you try getting few of them to conduct a focus discuss and take it from there. In our area they are organized and have leaders or heads of station, once you manage engaging the leaders and make them understand the study other things will follow smoothly.

[Micky Hingorani]

Hi Anne,

In this case, the team would need to refer to the issues management plan to see how best to deal with the situation. Prior to trial implementation, the site is required to compile an issues management plan where they can anticipate such problems in the trial and draw up strategies to deal with such situations.

 

The site could’ve worked with local MSM groups and educated the community about the upcoming trial. The site could’ve also worked with advocacy groups and human rights groups and strategized a community event to educate and inform the community about the upcoming trial and the work that is done at the site.

[Micky Hingorani]

Dagna i agree. they did work with limited resources. i guess its how they are used.

<span style=”line-height: 1.5em;”>volunteers do play i good part also getting an outsiders view.</span>

[Micky Hingorani]

I think CAPRISA uses ways to gain peoples trust and confidence, the way they build relationships in the community. on the positive side retention in care in accomplished and greater window for recruitment is opened.

CAPRISA also offers education (building schools). this gains more trust and understanding. they are very practical and dont only focus on HIV.

 

[Micky Hingorani]

Sustaining relationships when resources are limited.

This is where one has to really ‘dig in’ and mobilize the good will of the community. One of the best sources are volunteers in previous trials.  I suspect they would be very willing to help spread the appropriate message.  When you mention leveraging partnerships and exisitng forums, I also think of other diseases (e.g., TB, malaria), where one could turn to partners involved with these trials to get their help and to also discuss the message that the impact of that diseae may have on HIV (and thus the need for HIV prevention).

[Micky Hingorani]

So how do you sustain relationships when resources are limited? Funders sometimes allocate the most resources for the trial conduct stage of research — so what creative approaches do you employ to sustain engagement between trials when the budget might be tighter? I like the ideas above –i.e.  community events and leveraging partnerships and existing forums!Are there other ideas?

 

 

[Micky Hingorani]

Hi Charles, our site is similar to yours, in most cases we receive protocols in final stage very rarely the stakeholder/site have a room to make minor changes in the Site Specific Addendum where the trial is multi-sited. Responding to the situation about mothers being excluded, I guess here is where the higher levels in health such as Ministry of Health or Department of health   or any other authority  depending on the set up in your country, should intervene and  discuss with  sponsors and if necessary make it one of the necessary requirement for that study to be conducted in your area.

[Micky Hingorani]

Stakeholders engagement is about relationship building ultimately establish trust. Human beings psychologically get connected to people and groups that over delivery on their promises. In the instance the CAPRISA team brought more that research. The ensure development of the entire community and eliminated any barrier to community and access. One way to sustain relationship is designate the community as a research centre and in between research provide social amenities as much as resource can permit. We provided mosquito nets and borehole to our designated research village which was well celebrated.