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Apart our CAB, we did meetings with some relevant stakeholders, presenting the study, what was a first step to identify how to reach community organizations and health care providers. We also organized community events on HIV, in which we didn’t adressed the study directly, since it was not yet approved by our IRB, but that were a step towards being recognized among community.
Next step is to organize community forums, in spaces we identified in the preliminary meetings, in order to reach a wider range of stakeholders in LGBT community, to explain them about the aims of the study and possible benefits or burdens for community. That will probably lead to a wider process of stakeholders identification, what will help us to decide how to carry on future steps on consultation, educational, communication and recruitment strategies.
In parallel, we will produce material on research literacy and HIV prevention, develop our channels of online communication and keep media informed about the process.We do not have, in Brazil, any requirement of community participation in research, although we do have participation in the public health system in all levels, from local boards in the clinics to a national board.
National Committee on Ethics norms mention community participation in research as desirable, but we do not have actually any public support for this. My current experience is in a research sponsored by US, that have community engagement and CAB as requirements. We had a CAB formerly in our institution but it was closed after the end of the US-sponsored study that required it.
So, the current challenge is to develop the culture of participation first in our institution, and then try to spread the word nationally. We have been encouraging and financially supporting the building of a national network of CABs (all required by US-sponsored studies) for sharing experiences and strengthening. It will be important also to have documentation and objective evaluations of the processes (both internal and national) in order to share the experience in conferences or publications and with stakeholders like local and national ethics committees.Inviting team members to CAB meetings and providing feedback of CAB and stakeholders meetings to the team are helpful to increase awareness of the importance of stakeholder engagement.
I presented a report of CAB activities thorough the year, highlighting their contribution to the research process.
When I talk about the importance of community engagement to the quality of the research and development of our site, I always highlight that I am basing my points of vue on international recommendations like GPP and HANC recommendations.
