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Welcome Isaac! It’s great to hear from you. We are very excited to have you on board. Rest assured, we will all learn from one another! One of the main points of the course is to share experiences and lessons learned from engagement on the ground– you are off to a great start by being so proactive!
We look forward to speaking with you during next week’s orientation webinar.
Best, Anne and the GPP Team
Interesting thread!
Erica, this is such a great example of an issue or allegations that threatens to stigmatize trial participants or undermine support for a trial — and potentially on a broad level.
A trusted media partner, like Terfa suggests, is a great resource for ensuring that accurate messaging is disseminated in the community! You can also engage the CAB, key leaders, and other trial sites to prepare Q&As –materials that outline these crucial questions or issues, so you have responses that are already written out in advance. You can even consider pre-testing your responses or messages with your trial participants to ensure that they are clear and understandable.
Hi Clever–
The KEMRI research team in Kenya has some excellent lessons learned working with MSM in a criminalized environment.
A good case study which summarizes their accomplishments is documented in amfAR’s best practices guidance in conducting HIV research MSM in rights-constrained environments… I attached the document to this post!KEMRI ensured their CAB had MSM community members. They worked constructively with the police and media and even helped establish an advocacy organization called the Mombasa Movement for Men as part of their overall engagement strategy. So check out this information and again, consider joining the CoP for more opportunities for dialogue on this subject!!
Denver and others:
Learning about one another’s expertise is also a key benefit of this course. For example, I know that Desmond Tutu HIV Foundation in Cape Town has been a pioneer in the engagement of adolescents in biomedical HIV research. So reach out to Wadi and her team (look at your learner profiles!) You can also link with researchers on the topic of adolescents in research (and others!) in the GPP Community of Practice…. watch this space for more detail!
So how do you sustain relationships when resources are limited? Funders sometimes allocate the most resources for the trial conduct stage of research — so what creative approaches do you employ to sustain engagement between trials when the budget might be tighter? I like the ideas above –i.e. community events and leveraging partnerships and existing forums!Are there other ideas?
Jessica and Heidi– you have highlighted some of the complexity related to decision-making on this issue. When new tools are added to the standard of prevention, HIV incidence is likely to decrease and then the statistical power of the trial to detect significant differences decreases–so demonstrating efficacy becomes more challenging…in the long-term, trials will have to enroll many more participants, resulting in much more time and cost! And –ultimately–invalid trial results is an ethical issue, because it means that participants will have been exposed to risks for no real purpose…
So perhaps things like standards of evidence, the threshold (at which adding new tools will invalidate trial results), and processes for decision making should be explored– as part of early stakeholder consultation and negotiation?
So we know that the more repressive the environment, and the more unwilling governments and providers are to provide
services to minority populations—and therefore the role of community engagement becomes even more critical. In the most challenging environments, local advocacy or community organizations may be best positioned to take on service provision for more vulnerable populations. And again, this can not be a one-off consultation or discussion. As Dagna suggests, participation should be an honest conversation, with feedback loops, throughout the research process!! This kind of long-term engagement can then build the capacity of these organizations as well, to better address public health and needed policy changes on their own.Hi Phumla! I AGREE!
GPP reminds us that decisions about the standards of prevention, care and treatment need to be made collaboratively with key stakeholder engagement. This ensures that the pros and cons of the trial design are understood by participating communities, and that there is agreement on the rationale for inclusion or non-inclusion of some of the standards.
But here is another question:
Should participants enrolled in biomedical HIV prevention trials have access to higher standards of prevention/care than other members of their local communities?
I guess GPP would say that better relationships and transparency on these issues between research teams and stakeholders naturally lead to more ethical and participatory trials. But you’re right— how do we involve and consult community members, advocates, sponsors, investigators, national policymakers, treatment and prevention programs, etc etc when there are such great ethical and political complexities? There have been some global consultations among stakeholders to discuss the standard of prevention in biomedical HIV clinical trials and it’s critical for that conversation to continue! Decision making about the changing prevention landscape and how to react to emerging trial results will vary from country to country– there is no one-size-all or formulaic approach. But– bottom line– achieving consensus on these controversial issues requires investment and commitment from a very broad range stakeholders. Everyone has to ask and discuss the difficult questions, in absence of clear cut answers and sometimes with minimal information.
Great inputs!
I have a follow up question about a key participatory practice for Communications Plans– since ALL staff members, trial participants, and CAB members have a role to play in communications and serve as ‘ambassadors’ for the trial — do you currently conduct any media or communications training to prepare them to answer questions about the trial? And how are you capturing your internal and external communications strategies? Are they contained in your broader engagement plan or as a stand alone plan, for example?
Yes, engagement can indirectly result in better recruitment — but engagement is much broader and not just aimed at trial conduct. Ultimately, GPP is about ensuring that the larger research agenda is acceptable and responsive to community needs, as well as increasing the likelihood of generating meaningful and sustainable results. And stakeholders can provide input on all of the GPP topics areas and all stages of the research. The HVTN 505 case study that appears in Lesson 7 even illustrates how a research team incorporated significant inputs from stakeholders that impacted design and conduct of the research during the actual trial!
Thanks for that honest reflection, Charles. It is tough when you really think of the day-to-day realities on the ground for researchers. While there’s nothing inherently wrong with recruitment, when it’s the primary focus with the community, it can be inefficient and even costly in the longer-term. If the focus is on building trust and sustaining relationships, then the broader culture and community genuinely supports and champions the research and its benefits…..and then everyone naturally wants to be part of the process….
