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  • Mark
    Member

    Marie,

    I believe Mahesh gives a hint when he says: “engage the stakeholder Not recruit.”

    I see these lines blurred, and this may be somewhat outside of GPP, but I think it creates a big conflict of interest when engaged community members and institutions are given the impression that they are to recruit.

    I think at this point it is a fine line, but I always advocate that the community’s roles are to facilitate two-way communication, awareness, and education. So to give a concrete example, I would never say as a CAB member “I think you should participate in this study” or even “this study would be a good one for you to enter.”  Rather, I might say, “This study might interest you, and I can answer your questions about both the study, the involved people, and the processes that led to it being done.” More generally, our messaging is along the lines of “research is one way we make things better, and research is happening in our location” and “this research is being conducted with meaningful engagement of the community.”

    Mark
    Member

    I came to this course thinking that I have a strong understanding of the underlying principles of community engagement, but desiring to bolster my understanding of the structured ways these principles are codified in the GPP document. I think that’s true of the research staff at my site. We are long established and primarily working on NIH network trials in the US; these networks have long since been deeply invested in community engagement here and have very much internalized these values. I’ll be making some queries to see if there are gaps that I can help fill both in terms of staff knowledge and educating the CAB about GPP.

    Mark
    Member

    Great discussion. I’ll add that I agree that one size does not fit all.

    I always remind folks that volunteers are not employees. When I’ve shared my success with CAB leadership, I make the audience repeat that back out loud “volunteers are not employees.” While some management techniques that work well with employees are effective, one must remind oneself of where the power lies respectively.

    Also, in my setting, too much structure can be just as much of a problem as not enough structure.

    Great topic.

    in reply to: Welcome! #4395
    Mark
    Member

    Hello everyone. I’m happy to be joining this group to learn more.

    I’ve lived with HIV/AIDS for twenty-nine years and have served on various Vanderbilt University (Nashville, Tennessee, USA) and network community advisory boards since 2001. With the support of many organizations, I share what I learn by providing training and presentations to diverse community and professional audiences across Tennessee and beyond. In addition to AVAC and the US NIH HIV networks, I have worked as a community representative with the Tennessee Department of Health, the US Centers for Disease Control (CDC), the NIH’s National Institute of Allergies and Infectious Diseases (NIAID), and the Microbicides Trials Network.

    I am intentionally a generalist – I like knowing a little about a lot of things (and more about some things!) and being someone who can connect different people and groups to acheive success in our work against HIV.

    in reply to: Community Represantation #4394
    Mark
    Member

    Hi Isaac,

    I think there are a number of ways that community can be engaged related to research. A community advisory board is one. Focus groups are another. There can also be other kinds of processes like surveys, discussion groups face to face or online, and public community forums. I’m sure there are others. Each has strengths, weaknesses, opportunities, and challenges. As we become more experienced and knowledgeable we hopefully can be more skilled and strategic about choosing.

    Of note, naming a group a community advisory board doesn’t mean it functions well as one – so what I think we really need to focus on is function.

    I think it depends on what you see as the need.

    Just one person’s opinion.  Great question.

     

     

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