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To sustain engagement with SH after HIV vaccine trial closure, The research team and stakeholders will discuss the availability of HIV testing services to participants after the trial has completed considering that some of them will have VISP following vaccination and provision of education related to VISP to health care providers and general community, since VISP has been one of issues bringing lots of concerns and misconceptions in our area, therefore it is important to continue engaging them .
As for result dissemination , a plan for result dissemination will be developed in advance with the research team and stakeholders. When the results for the trial are released the site will organise a meeting with stakeholders to develop key messages to be disseminated to the participants, other stake holders and community in general.
In post trial access, the high level health officials in the ministry of health, officials at regional as well as district level are most influential at this stage, since there will be guidelines to be developed on supply or distribution of the product. However the local government and community stake holders will have a special obligation in advocacy and ensuring accessibility to the trial participants and the trial community in general.
Thank you Terfa and Anne, for great suggestions, as a site we are discussion to have more discussion forums with media personnel and if possible we would like to have at least one of them in CAB to expand the range of communication and education also whenever we plan to have a press conference or similar event it will be easier to reach them.
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.
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.
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.
Our site has been has been in place for more than 15 years now and we have been engaging the community using the local existing structures such as Local Government Authorities, community leaders at ward and street levels as well as community based organization and other influential personnel in the community. Fortunately we started with HIV cohorts in general population, whereby there was no much interventions or investigation product and participants were prevailed to have free medical care of minor ailments. With involvement of broader community stakeholder engagements it was possible to gain trust from the surrounding community. In one of the projects our site supported the renovation of health center and dispensaries in the study catchment area and in some facilities the site assisted purchase of laboratory reagents thus increasing trust and mutual respect between the site and community in general.
This is a challenging situation,
However i think before conducting the study, the research team and especially the community outreach team should have conducted a focus group discussion with the MSM and other advocacy group members to understand their views and what are the threats around their practices , and what is to expect if they participate in the trial. together they will discuss on strategies to mitigate the harms if/when they happen, since they are the main stake holders in this case.
Additionally is important to engage other authorities /bodies working with human rights and other activists, using information from these discussion the research team should develop a site management plan for the trial.
Hi Guys,
Sorry for just coming back this late, I had no access to network for some days.
Thank you Jessica , Nokulanga and Charles for your contribution for future trials we are planning to conduct seminars for health care providers in the study catchment area especially about VISP and other basics related to participation in HIV vaccine trial, There was a time we tried to invite traditional healers in our stake holders engagement meetings they did not come, maybe we use a different approach or may be try joining their meeting if they have meeting. I have been also thinking about engaging football clubs at community level, thou is sort of difficult but in guess is possible since most of youths (males) like soccer.
Charles, Thank you for sharing your experience.
Erica
Thanks Nokulanga for a good advice, This scenario happened to our site several years ago, actually it was the CAB member of that are who come to notify the clinic that this was the reason people were reluctant to come for their schedule visit. The man was screened out due to his HIV status and it seems he did not expect that result as he had tested somewhere about two months earlier and he was free from infection (probably he was in window period). So he was telling people that our test give false results. we sort of managed the situation by inviting all participant enrolled and those on screening for a long discussion and we conducted a community meeting but like you have said we did not reach everyone and due to this we lost some potential participants who believed his story.
Although at the end BTS yield good results, I think there was problem is stakeholder engagement at different levels (the onion diagram) in the beginning of the trial. It seems there was no common understanding among advocates, organization and different network, the Ministry of Public Health and the sponsors on the details of the trial design and procedures. On the other hand the reaction of advocates showed the research team that the community is not asleep, thus it was a call for the researchers to do better stakeholder engagement in future.
For better negotiation of HIV prevention package, the research team was supposed to engage (may be at the stage of trial design) with the Bangkok Metropolitan Administration, the Thailand Ministry of Public Health, Thailand’s narcotics law officials and the sponsors (CDC). These stakeholders would have understood importance of provision of clean needles to study participants for the success of research.
Hi this is a challenging situation to our site, we also receive most of the protocols in final stage, although ocassionally we have an optoni of having a site specific addendum if there some areas, where the site can not comply or study on that particular area (for example, recruiting transgenders as is a rare or even unknown to our societies). At least the site is able to modify few areas, otherwise the CAB are most of the time engaged in review of the Informed consent and other recruitment materials.
I do not consider recruitment as a key engagement outcome,
I understand and completely agree that engagement is beyond participant recruitment, however when it comes to Monitoring and Evaluation issues at least recruitment is something that can give us numbers, or can be used as an indicator.
At times we organize engagement activities like a community meeting or event to raise awareness on a trial, we speak, provide leaflets etc, but at the end of the day is not easy to measure and we are even not sure how many people read and understand the leaflets unless we use other ways of evaluation may be administering a short questionnaire before and after. Additionally just like Charles mentioned in most projects serious community engagement is done around recruitment and that is when the money for outreach activities is released to ensure that we get the desired numbers.
I guess is possible to change this perception but it needs more effort to get the PIs and other scientists understand that community engagement is an ongoing process with or with out recruitment.
For our site in most cases the protocol are sent in the site in final form, however just before submission to the ethical review boards we normally translate the Informed consent into kiswahili and in a simple language for a non scientific person tho understand. The PI of the study or the designee presents the study to the CAB members ( i.e. the tittle, aims/goal, objectives of the study, inclusion /exclusion criteria, duration, number of visits and some basic study procedures) in shwahili, the members gets time to ask questions and discuss the study. there after the members are given the Informed consent to review, normally they are told to comment with in two weeks so that not to delay submission to the ethics. If there are comments we include in the final document and submit to necessary bodies. In a later stage when the study is about to start and we have got all the necessary approvals the site conducts an information seminar to the media personnel and if necessary prepares a press release. Then organize another information seminar for the Local Government Authorities, community leaders and other Heads of Departments in health at regional and district level, where the study is explained again in simple language and as usual time for question and answers
Community service protest rarely occurs in our site, for instance in the past 14 years I have been living in this area it occured once like 4 or 5 years ago, and actually study visits were affected because the participants were unable to come at the clinic as all roads were blocked. Soon after knowing about this event we phoned all participants who were supposed to come on that day and the next day, we gave them other appointments depending on their window periods and it worked just well. and as for solving the problem actually the research site could not do anything because it was the matter of the Municipality and police to release the chairperson of people who were doing business in the one of the big markets in town due to reluctance in paying certain taxes. So the site only had to wait for the responsible authorities to work out the matter
So far in our sites ocial media have not affected community engagement strategies or activites due to its minimal use in the area, not many people own smart phone or have access to internet.
In our site we experienced a romuur related to blood draw from participants, it was said the blood was for sell to the USA by the research site, and the issue was that the site was compasating particpants with small amount of money while they are getting lots of mone from the whites.
we had to call a meeting with study participants, discussed with them, explained that the blood drawn was for research purposes and there is not possible to sell of the blood of less than 10 mls from different people, you can not even donate to someone. Then there was a meeting with the community leaders together with CAB members to explain the matter. There after we conducted 3 radio talk shows where the study physician were explaining and responding to questions. so most of people understood and especially when the study participants were okay, the rumor was cleared.
