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CAPRISA’s approach was effective as it included non-HIV related activities that played a huge impact on the community. Community engagement should be addressed with a holistic approach. Many times there are other factors that influence a persons behavior such as adherence to study product or attending study visits. HPTN 073 for instance implement C4: Client, Centered, Care, Coordination. This approached allowed study participants to address their own psycho-social barriers and determinants of health. Once these were identified participants created their own action plans and deliverable. Following these steps staff at the clinic aligned the patient external resources to assist with their self created action plan.
In preparation HPTN 073 the HPTN consulted with the BGRG and the Black Caucus. The Black Gay Research Group (BGRG) is a diverse group of Black gay researchers committed to creating a platform for presenting, discussing, and analyzing scholarly work being produced by and on Black gay men. The Black Caucus is a highly knowledgeable interdisciplinary group of dedicated professionals for expert consultation with unique expertise in conducting research on, about, and related to the lives of Black MSM at increased risk for HIV infection. The group provides HPTN protocol teams with technical assistance and oversees community engagement practices for HPTN 073 specifically.
If a version protocol were to reach a site without community stakeholder engagement I would suggest their input should be incorporated immediately. Although the consultation may not affect the study design at that point it could influence study implementation.
Social media has served as an effective way to recruitment study participants. Once enrolled into the study participants have the option of “liking” and “sharing” the facebook page associated with HPTN 073. Also other non traditional methods of recruitment and social media are phone/tablet applications such as Grindr and Jackd. Thus far I am not aware of any negative feedback via social media about HPTN 073.
As the community engagement prepares for each study a CAB is created. Member of the CAB representative or have extensive knowledge of the priority population being addressed in the protocol. My team feels it is important to formulate CAB that can provide informative feedback to the research team as they gear for study design and implementation.
I agree stakeholder engagement can be challenging however an effective plan must be upheld to foster the appropriate deliverable. Additionally, it is important to know when stakeholders should be included in the research and when their presence can be omitted.
Formative research assesses the community any potential study will be implemented. This information is important as it will determine if a study will be accepted by the community and will enrollment be successful. It is my position that every CAB should be study specific. For instance if a study is recruiting black MSM and transgender women it is important to have the same representation on the CAB.
It is important to engage the community of various research approaches. Community engagement should be implemented even when a study is not currently active or enrolling.
Community engagement is critical for any trial being implemented. In fact community should be included from conceptualization, implementation, study close and the release of study results. Community stakeholders know if a study will or will not succeed in a specific area therefore their guidance should be included from start to finish.
The Community Engagement team at FHI 360 fully understands the importance of stakeholder engagement. For instance, staff at FHI ensure there is community representation in every study from planning, implementation, recruitment, study close out, and result dissemination. Community Educators and CAB members are provided the opportunity to review concepts as they are drafted. Upon review educators and CAB members share their thoughts and how the proposed concept would impact their communities.
