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With regards to the question of whether formative research participation by community stakeholders could pose risks because of visibility concerns, I definitely think this is a huge issue. In the formative research that we do at Bridge HIV, we take this into consideration and try to adapt the format of the formative research data collection in a way that will seem comfortable and appropriate to the stakeholders, such as an online interface that could be accessed in private, or certain elements of confidentiality or even anonymity if the research allows for such protective measures for individuals. We are lucky to be conducting our research at a trial site and in a city where these sorts of protective measures and tools, like the internet and certain forms of technology, allow us to provide these safer, less visible ways of participating in formative research to our community stakeholders and participants, but I would be curious to know how other study sites who do not have this ability handle similar concerns.
<span style=”line-height: normal; text-indent: -0.25in; font-size: 12pt;”>1) Formative research should tap into community engagement, but also inform it; in that sense, it precedes and also overlaps with engagement of the community. They are alike in that their goals are aligned: making sure the study will be the best fit for the community and the most successful it can be, for all stakeholders and researchers alike. They differ in how they are conducted, and although they can both inform each other, formative research does always start out first.</span>
<span style=”line-height: normal; text-indent: -0.25in; font-size: 12pt;”>2) Bridge HIV conducts formative research activities less frequently than perhaps we should, but often enough that I feel we are getting the information and perspectives we need to in order to best engage the community and conduct our outreach, education, recruitment, and ultimately the clinical research itself. We also conduct online surveys and in-person/phone surveys with community stakeholders to inform the development of research protocols, such as the current pre-study survey we are conducting at our site called the HOME survey, which is looking at perspectives on HIV testing within African American and Latino MSM and trans female communities. Community stakeholders are included in formative research activities such as focus groups and group interviews to understand community perceptions of HIV vaccines, clinical research processes in general, and HIV prevention as a broad concept. Community stakeholders are also included in the CAG, which regularly informs the development of these kinds of formative research projects and objectives.</span>
In response to Anne’s questions about routinely setting goals and objectives for stakeholder engagement, I will say that the community programs team I work with does have routine strategic meetings where such things are discussed, but usually we tend to jump straight into activities (community outreach, education, building, etc. and recruitment venues) without enough emphasis on the goals and the objectives that can lead us to more targeted and successful activity planning. I will definitely bring this up at our next meeting so that we can take some time to reflect on the goals and objectives more at our future strategic meetings!
1) Goals can sometimes feel too broad and overarching to fully grasp or even imagine completing. Objectives provide a way to break down amazingly optimistic goals into manageable, scalable steps that seem realistic and achievable. Activities are the extension of those objectives – turning brainstorming into action! At least, that’s how I conceptualize the three. I welcome others’ feedback on that description.
2) Stakeholder engagement that is ongoing through the entire trial process builds trust between the researchers and the stakeholders, rather than darting in and out for feedback and only periodically seeming to value stakeholder opinions or value their autonomy. Continuous engagement shows true respect for stakeholders, and feeling respected breeds mutual trust and understanding, which are usually intangible but could be measured by questionnaires about how much the stakeholders feel they matter in the grand scheme of the research. If the stakeholders do not feel respected and valued, they are likely to back out of supporting the trial, and as has been seen in multiple trial sites around the world, this can result in the shutting down of entire studies. Furthermore, just as the research evolves, so too does stakeholder opinion and contribution; stakeholders need to be a part of the evolution of a study, from its conception to its endpoint, and this could be ensured by mandatory check-ins at certain timepoints over the course of the trial, such as monthly CAB meetings for example, where all parties get to provide updates and feedback in an organic way. Interruption of this constantly co-evolving research process would undermine the entire point of involving stakeholders in the first place by decontextualizing the study halfway through its duration; this could lead to decreased retention and negative views of the study and/or study products, site, or funders that could last long after the study was completed.
Dear John Mdluli,
I love your point about how participation in the FACTS 001 trial gave your site the opportunity to engage with communities/individuals at high risk for HIV that were, per eligibility criteria, recruited for that particular trial. While this used to be true for us at Bridge HIV when we were one of the study sites that participated in efficacy PrEP trials in previous years, things have shifted now.
As such, one of the challenges that our community programs team at Bridge HIV has experienced lately is that all of our currently active studies are Phase I or II trials (for vaccines, experimental microbicides, etc.) that are looking to enroll participants at low risk for HIV, while most of our community partners are organizations that serve and are run by communities at higher risk for HIV or who have already seroconverted. This has created an interesting divide between our recruitment efforts and our community education and engagement efforts, and requires new strategizing on our parts on an ongoing basis for how to balance both efforts.
1) Stakeholders are critical contributors to and facilitators of the research process in biomedical HIV prevention trials because they possess invaluable and unique insight into and vested interest in the people involved in the trial, the science itself and results of the trial, and the ethics of conducting the research for any given trial. Without their input, study protocols would lack the specificity needed to engage most appropriately and successfully with people who come into contact with the trial, whether through participation themselves, knowing other participants, or generally being affected by the running of the trial in their community, district, or country. Additionally, to prevent unethical research practices or culturally incompetent approaches to the research, stakeholders’ involvement in study design and ongoing feedback during and after the study ends is of great importance. Finally, without stakeholder buy-in, involvement and trust there would be no studies, as has been made abundantly clear in several proposed north African and southeast Asian trials in the past. Ultimately, therefore, it is in everyone’s best interests to engage stakeholders in all parts of the research process in order to inform and, in the end, accomplish the research goal: HIV prevention and, perhaps one day in the future, eradication.
2) Bridge HIV values stakeholder engagement very highly, drawing from multiple different stakeholder groups to inform our protocol development and recruitment strategies. Our Community Advisory Group, which consists of individual representatives from all walks of life and organizational or community backgrounds, meets monthly to receive updates on our study development and progress, voice concerns/needs/desires, and submit feedback about the study site’s work. The Community Programs team at Bridge HIV, of which I am a part, also meets weekly to discuss our own strategies of engaging stakeholders, especially as engagement pertains to recruitment for our studies, which is the main way our team interfaces with the community. We encourage and welcome discussion and conversation about relevant HIV prevention and vaccine research and news amongst our social media followers on our Facebook pages and Twitter accounts. We also look for opportunities for field engagement and recruitment so that we show the community-based organizations and individuals we are working for and with that we care about the events and work that they do and that we want to develop true partnerships rather than simply parasitize and benefit off of them for the purposes of recruiting and enrolling participants in our studies.
Hi everybody!
My name is Laura and I work as a clinical studies recruiter for Bridge HIV, a division of the San Francisco Department of Public Health.
I just graduated from university this past year and enjoy working in clinical research. I ultimately hope to attend medical school in the next couple of years, but in the meantime I am continuing to look for opportunities to dive back into sexual and reproductive health counseling and testing services in the city so that I can keep up my patient-provider relationship skills from the work I did in this field during school.
I am looking forward to learning from this course and from all of you!
Cheers, Laura Potter
Leader Kanyiki Ngooyi, it is nice to see a familiar organization represented here! I spent several months assisting an MRC-funded UCT/DTHF study at the Desmond Tutu HIV Centre in Masiphumelele one year ago, and it was an excellent experience working with colleagues I met at the Desmond Tutu HIV Foundation. Some of my best experiences with participatory practices in clinical research were from that project DTHF was helping to organize, which is wonderful and something I aspire to at my current job at Bridge HIV.
I look forward to hearing more about the studies you mentioned being involved with at DTHF!
Best, Laura
