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Being able to monitor and evaluate the results of community engagement, and presenting it for the team, is another way to raise awareness on the importance of this process.
Community Engagement is often perceived as being only about recruitment, but I have been discussing with team the importance of community support to the study i order to prevent future frictions and assure a smooth process. I have been highlighting that support is only gained when there is an proactive and transparent process of debate, and then the time we invest now will be compensated in the future, with long lasting effects thorough future studies.
When approaching the community organizations, we must be clear about the objectives of engaging community in research, explaining the importance of our community understanding the study, its benefits and burdens, and how a partnership may facilitate both the compliance with community needs and values and scientific integrity.
We had not activated our social media channels yet, but we plan to do it soon, in order to build a relationship of our research site with general public and attract audience with interest in HIV science, prevention and human rights. Our goals are building reputation and trust, disseminating our events and advertising our studies for recruitment.
Another research site here in Brazil had issues when announcing in social media recruitment for a biomedical prevention trial for MSM. There were pictures of gay couples and a message based on a call for helping the progress of HIV science. There was a mobilization of people who made negative comments on “associating MSM and HIV”, with an accusing tone. It was not difficult to defend the purpose of the trial against such unfounded allegations, but it was really a source of distress for the team.
I feel the same here, but I think that even inside the frame of a trial-specific community engagement program, there are objectives and activities whose consequences go way beyond a specific trial, like research litteracy or PrEP education, and building relationships with CBOs.
The trial I am working in is the first to have community engagement for a while in our site, so we are rebuilding the Community Education here. Although we have specific goals for our Community Engagement Plan that are related to the trial objectives, I try to balance short and medium term objectives, like starting recruitment with full intensity, with the broader, not study-related goal of building a long term relationship with the community, even if that one sometimes seems clash with shorter term aims.
Engaging stakeholders in a systematic way, with planning, listing and prioritizing help us to ensure a timely engagement.
Prioritization of stakeholders and need for wider advisory mechanisms besides CAB are two of my take away’s of this course. Being more systematical in engaging community will prevent gaps that may have negative impact in the future.
A more professionalized and thoughtful communication is another good point. Have all the sensitive issues in mind, proactively communicate them when addressing stakeholders may prevent conflict and distrust and give a thoughtful and confident image.Unavailability of PrEP in different countries, or upcoming availability, may impact studies. In our case, we are about to begin a study on injectable PrEP, to be compared with oral PrEP. Participation in this study may be seen as an opportunity to access to PrEP (a case of therapeutical misconception), so it will be very important to highlight in the informed consent process that the participant may be randomized to active injectable PrEP, whose efficacy is unknown. Even then, a person who is not able to access PrEP, e.g. who has no money to buy “wild PrEP”, may tend to join the study – and probably will quit it as soon as oral PrEP is available in the public health system.
The selection of the site was here a key issue. A previous environment assessment involving community and others stakeholders would have anticipated the conflict that arose with doing research with a criminalized population for who a basic prevention tool was denied.
Once the study has been initiated and concerns arose, proper feedback should have been provided to civil society groups demands.
Results dissemination should have included discussion on denial of harm reduction to participants, the factors involved in that and possible consequences to scientific integrity and human rights.Anne’s webinar was very helpful in balancing the importance of traditional media when compared with social media. Due to budget constraints, we tend to focus in “do it yourself” social media, hence it was good to hear thought on planning, building relationships with and understanding the role of media representatives, and writing press releases, what will make certainly easier for us doing this job as amateurs.
It is really hard to get attention to the subject HIV among media or among LGBT community stakeholders. Here in São Paulo, PrEP is also mostly unknown, since it is not still available, what doubles our communication challenge.
Consulting CAB.
Convening meetings with relevant individual stakeholders and CBOs/NGOs.
Approaching existent government programs that have already built a network of stakeholders. Some examples are the network of LGBT community centers that is being built in São Paulo by municipal government, and the network of HIV care and prevention centers.
Convening community forums inviting identified stakeholders.
Convening educational events on HIV open to wider community in order to get insights of community values and being known by community.
Literature search.
Online media search, including material about and by the members of community, wwith identification of main social media stakeholders.
Using information from media, interviews and visits to map community.It is good to know how developed CE is at your site. At mine, all functions are developed by me. I order to root CE within my CRS, my main strategies will be keeping a detailed Monitoring & Evaluation process and establishing partnerships with other sectors of my institution (that is the office of HIV programme of the state and a huge clinic itsellf) that are used to community participation, such as Prevention Division or Care Division, in order to establish sinergy, for example, sharing outputs, like the community mapping and stakeholder list.
