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I share the sentiments of the team. The course is very intense but very useful and thought provoking. I had the opportunity to discuss my questions during the GPP calls so I currently have no questions.
Thank you GPP team.
CAPRISA’s approach to community engagement proved successful because they engendered themselves as part of the community. They built trust with the communities by doing non study related community work that empowered the community and made them part of the community.
At our site, we maintain relationships in the community by Imbizo (meetings) where we tackle different HIV related issues and education. We would get various stakeholders to be a part of them event. EG, we would get guys from GK sport to have some aerobics and boot camp and then educate about the importance of living healthy and looking after yourself, then go into HIV prevention and HIV prevention research.
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.
The lack of provision for clean needles affected the data in that key stakeholders did not have any confidence in the validity of the results. This is not good in that the stakeholders are unlikely to share these results with their communities. Stakeholder engagement was not implemented properly and it is evident. Stakeholders were not consulted during the conception and write up of the protocol.
Attempts to engage stakeholders before trial implementation is crucial. This will help the site staff and sponsors see any potential problems that may arise in the various communities and get a chance to iron out those issues before trial implementation. Stakeholders are valuable to the trial if they are on board and have knowledge of the trial prior to trial implementation so all efforts to consult and engage with them should be tried. Find out when the local community has any meetings and inform the community about the trial at those meetings or at community events. Putting out an ad on the local newspaper and the local radio station could also prove to be fruitful and could get the community and stakeholders talking.
This has been very insightful, colleagues and is well worth thinking about and planning for. Thanks for the insight
1) During a meeting with the CAB to review the initial draft of the study ICF, the CAB read through the IC and documented the things they were not happy and the suggestions that they had. These were all noted and sent to a regulatory representative. Some of the changes were implemented, but not all and these were discussed at a follow up meeting with the CAB members explaining why some things could not be changed in the ICF.
2) The site will still review the protocol with the CAB members and answer and explain any questions and comments they may have. I think having a representative from the sponsor will also be helpful and if there is anything the site cannot answer, it will be escalated to the IRB.
1) Social media has not affected the conduct of the trial at my site. We are considering using it in future to see how people will respond to it.
2) During results dissemination the participants thought that the number of participants that tested positive for HIV during the trial was the percentage of participants who got infected at the site. E.g. 66 women became HIV positive during the trial and they thought 66% of the women at our site got infected with HIV. When we became aware of this, an emergency meeting was held and the misunderstanding was clarified with the participants. Also, this was communicated with our local CAB and stakeholders. We also decided that every time a participant comes in to get the results, we will clarify this misunderstanding so that they were able to communicate it with their peers on the study.
In my community, it is on the rise and police are battling to control it because drug dealers have become intelligent with their packaging of the drugs. It’s not your typical white powder or newspaper rolled marijuana. Drugs now look like sweets and are named accordingly. I figure most youth are using drugs as a form of escape and there’s also the added strain of peer pressure.
1. Formative research is a means of understanding the community within which the research will take place. we can use this platform to find out how knowledgeable the community is about HIV and HIV prevention research. Once this has been ascertained, we can go back into the community with the correct tools and activities to inform them about HIV and HIV preventions research thereby engaging them and getting them to be familiar and comfortable with the research.
2. In May this year we hosted a HIV Vaccines Awareness Day to inform the community of Soweto about HIV Vaccine trials. Local stakeholders were involved, like the LGBTI and local NGOs that perform HIV testing and counselling. Instead of having a general information session, we played games with the community and gave away prizes to those who participated in the games. This was a great way to educate and involve the community. At the end, there was an information and answer session where they were free to ask questions. They were also encouraged to go to the stalls in the venue to find out more information.
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.
Hello Everyone,
Honestly, I had the perception that engagement was a “once-off” meeting until I was hands on in the community side of things. Now I understand that it is an ongoing relationship that needs to be nurtured. I must say that at time, I find it a bit daunting, but I’m also very excited about the work that has been done and the work that will still be done in our community. In my site, even when resources are tight, we come together. Instead of hiring catering for an event, the staff members cook and this helps decrease costs and has brought us together as a staff and has given us a better understanding of Stakeholder engagement.
Great point, Neetha! I do think that they should be involved in the media training and be involved in the messaging of results. I think it’s also important to involve them continuously, not just at results level. Things may happen during the course of the trial that can create media interest and if the key stakeholders are well informed about the trial, they may assist the site as well in informing the community. Perhaps we should look at media training as something we do early in the trial so as to prepare our stakeholders for anything that may happen during the course of the trial.
I think they have a good understanding of stakeholder engagement, and they do value it. At events the team goes all out from planning to execution and are always willing to go the extra mile. This happens at site level and when we are also invited by other stakeholders to participate in their events.
