1. I think engagement efforts are of utmost importance, long before someone becomes a participant or even identifies as a stakeholder. Just familiarizing people with clinical research and building trust/providing education and awareness to communities and populations that are traditionally harder to reach or somehow marginalized from research and medical arenas — these efforts can have a huge impact on how a trial site is perceived. Word of mouth is especially important in some of these marginalized and hard-to-reach pockets of the population, so one person’s good or bad experience with us can be the deciding factor in whether we garner support from a large stakeholder group, or not. As for a concrete example, I have been in the room for in-service presentations or conference events targeted towards some of these populations, such as people of color or trans* people, where I overheard either supportive/approving comments among audience members, or I saw reactions and overheard negative comments citing distrust of certain things that were being said or the people who were saying them. I have also heard from several people over the phone while I screen them for our studies that they are very glad we include so many gender and race options for them to identify themselves, including a write-in option as well as a “decline to state” choice. This sort of wording on the phone questionnaire arises only from consulting with and engaging with these same communities and stakeholders whose representation in clinical research is historically low due to distrust of researchers, in part due to researchers’ lack of competency/humility. If someone feels right at the onset of the screening process for one of our studies that they will be respected and recognized for exactly who they are, then they are likely to enjoy their experience in the trial significantly more, not to mention that they will also be more likely to let friends who are also in their communities know about their positive experience.
2. I think CAPRISA must have done an excellent, truly thorough job of formative research to identify all of the non-research-related or health-related needs at the trial site, because by focusing on providing other services and education to key groups at the site, the researchers were able to build trust and the foundation for lasting partnerships long after the completion of the trial, not to mention how these efforts benefited their protocol development and study design, and later, their study recruitment and retention. Additionally, there was extensive effort put into education and awareness before the trial began, which accomplished the goal of engaging people in the goals and purpose of the research and invited them to become more actively involved and invested in the project, rather than remaining passive or becoming despondent and disinterested in the study.
3. To sustain relationships with communities after and between trials, we continually make an effort to schedule in-service presentations for staff and clients at our partner organizations and at various stakeholder organizations and groups. We also engage previous participants and other folks with whom we have made relationships before and during a trial as members of our CAG whenever possible, or if their schedules do not permit this commitment, we host community forum events every few months, as well as inviting the public to panels with guest speakers and representatives from the global network as well as local stakeholders and researchers to keep the communities we engage with informed about the current developments and issues going on in HIV prevention and vaccine research, policies, and news. Sometimes the subject of our in-service presentations or forums strays from the sole focus on HIV and includes broader themes, such as health equity more generally, in order to address additional concerns of the communities we have these relationships with.
