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Hi Kathrine,
Good to see you hear!
I share a similar sentiment in that I feel that I haven’t done enough as I go through these exercises, however I feel that applying the lessons learned will take my site’s stakeholder engagement to the next level. I commend you for taking steps to hold focus groups and trying to understand the relationship between the trial site and the community. It’s the beginnings of developing a good relationship.
As I read through the different posts, I thought about, “What can I do now?” I began to reflect on focus groups we held among transpeople last summer through fall. The data is still being analyzed, but will be ready by the end of May. My next step is to create the opportunity to share the data with the focus group participants and other transpeople. Perhaps that is something you can also do with the findings of your focus groups.
Drawing on your real-world experience, describe a time when stakeholders in your context were not involved as meaningfully as they could have been. What were the consequences and/or impacts on your research? (Be honest and challenge yourself … )
Hi, Sorry I’ve been MIA.
I feel that we missed an opportunity to engage more transwomen stakeholders during the last proof of concept HIV vaccine study called HVTN 505. The study was designed to enroll 2500 MSM and transwomen in the US, however the study enrolled a mere 28 transwomen. We only enrolled 1 of those 28 at our site. I say we missed an opportunity because we received plenty of funding and support for community engagement from the HVTN and we applied for and received a substantial amount of ARRA* funding that also supported community engagement efforts. I hindsight, I feel we made the mistake of not engage transwomen early on in formative research, like focus groups and we did not develop an educational and recruitment campaign for transwomen stakeholders.
I feel a major consequence is that there were not a significant number of transwomen in the study to provide good evidence for questions that transwomen ask. We held focus groups among transwomen after the study was completed and a question has been, “How would the vaccines impact those on hormone therapy?” We also found ourselves learning how to engage and increasing our cultural competency after HVTN 505 was done. I feel another consequence is that we still have to gain the trust of transwomen as we embark in the AMP study, a study that includes transwomen.
Hi Santorra,
I’m not sure of the reason behind our PI’s rationale for her desire to improve in community engagement among certain community stakeholders including Black, Latino, and trans*people whether or not they are straight or gay identified. I think it’s because she feels that these stakeholders are the most affected by HIV/AIDS and she feels we owe it to them to include them in trials for which they will have the most benefit if successful. Data for vaccine studies in the U.S. demonstrate that white people are most likely to join a trial, although we all know that Blacks and Latinos bear the highest burden of the infection. We understand that more resources are needed to engage these communities and the community education and recruitment funding we get for studies is never enough to invest adequate resources among Black and Latino (again, including cis-gender and trans*people) stakeholders. Hence, our PI looks for other resources.
I think it also has to do with thinking long-term. If we effectively enroll stakeholders into studies that are most likely to benefit from an effective product, then the people that most benefit from the product may be more likely to use the product if the product is found to be effective.
~Jorge
Hi Nkunda,
It’s great to hear that your staff are all trained on GPP! I feel that most of my co-workers should also be trained on GPP, but I was afraid that not all would be able to enroll and complete a course like this soon enough. Did your co-workers complete this as well or is there another GPP training that they completed?
To what extent does your entire research team have an understanding of the value of GPP and stakeholder engagement? For example, how does understanding vary among team members? Explain your answer.
I feel that my co-workers at Columbia Research Unit (and I) have not been trained on GPP, therefore we do not have the capacity to value GPP, however my co-workers and I do understand the importance of engaging with community stakeholders from experience and other training modalities like GCP courses before, during and after the implementation of trials.
We have undertaken projects that include creating spaces for people of different racial, ethnic and cultural backgrounds to have a voice about the trials we conduct and how specific trial results would affect them. For example, we share a diverse community advisory board of 19 people whose makeup includes heterosexual, gay and trans*women of from different age groups and racial/ethnic backgrounds. We are working on the inclusion of at least one trans*man. We have conducted assessments of knowledge, attitudes, barriers and motivators towards HIV vaccine research among different communities that included Latinos, health providers, men that have sex with men, women that have sex with women, black women, hetero-men, hetero-women, trans-women, and trans*men. We have also hosted a forum along with another CRS in NYC to allow people from the LGBT community to ask questions about PrEP when it was first licensed and to voice their opinions as to how the implementation of PrEP would affect how sexual practices may be affected.
Our principal investigator is often on the lookout for funding to allow these assessments and events to happen and the rest of the staff all chip in to allow these activities to come to fruition.
It would be great if GPP was a requirement and if there would be funds allocated solely to carry out GPP, in addition to operational and community education and recruitment expenses!
I feel that different bodies of community can be more effective than others depending on the task at hand. CABs are often times well-versed on the the clinical trial process, so generally understand what would feasible for trial sites in carrying certain recommendation. CABs are often times diverse, at least in my experience, so advise may be given from people that are not necessarily from some study target populations. Hosting focus groups can be highly effective, if advise is needed from a specific target population in greater numbers than what you may find among your CAB.
I worked in HIV prevention research for almost 14 years.I got my start working among drug users at risk of HIV by testing behavior modification tools within Columbia University’s Mailman School of Public Health for the first 5 years of my journey. My second and current leg in my HIV prevention journey has been as part of the community engagement team at Columbia Research Unit that tests different candidate HIV products that include HIV vaccines, long acting injectable PrEP and the infusion of broadly neutralizing antibodies.
While I have a rich history in community engagement, I understand that mechanisms by which to educate are ever evolving and I’m always looking to learn about new effective strategies.
I look forward to engaging with you all here and potentially in person at some conferences!
Best,
Jorge
To me, it begins with being cordial, respectful and understanding. It includes informing the participant before they join a study about the realities of participating in a clinical trial, even if it means running the risk that the participant will decide that joining the study is not a good idea for them.
I agree with Bamidele. Having CAB by-laws (rules and regulations), that are constructed by the CAB itself. Take the CAB’s advise seriously, so they know their voice is heard and that their opinions are reflected in the research being conducted. Ongoing training and being updated on the status of studies is vital, in my opinion.
