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This is really useful information. Social media is a such a great way to reach out to areas you don’t currently have a relationship. Is there a way you capitalize on your social media attention? Do you engage in follow-up events or other advisory mechanisms based on the feedback you get from the Facebook postings?
Involving the media can help get your messages out to the public but how can it help with formative research? Formative research is about gathering information about the local community and starting to get input about mechanisms. Can you elaborate a little on how you might be using the media to gather information from the community?
Mmapule,
Accrual is important and certainly a metric of success but it is not Good Participatory Practice. If you are doing good stakeholder engagement you will likely have strong enrollment and retention numbers. Formative research helps build trust between the research site and the community. It also helps establish the stakeholder advisory mechanisms that will be used in a trial.
I love that you are using other events like marathons and imbizos to talk about HIV and vaccine research. Another strategy is to partner with different organizations. For instance, family planning groups are great organizations to partner with because they are talking about sexual health. HIV can easily be incorporated into an agenda in the same way family planning can easily be incorporated into an HIV research event.
How has the community responded to the current strategies you’re using during the formative research phase?
Hi Faith,
This is great! I wonder if you are talking to older groups outside of CABs? CABs are a useful tool. It seems from your wording “stakeholders from various CABs” that you might have a good diversity in your CAB composition. CABs by their nature are limiting. You may want to participate in a CAB, but you can’t make the commitment or the meeting schedules. So it is important to think about gaining feedback from other groups/individuals in the area. I’m interested to hear what other advisory mechanisms your team uses to get input.
As to the investigators being more involved, I’d love to hear what others think. My general take is that there needs to be advisory mechanisms that get them involved. For instance, a science cafe where a researcher can talk to the community about a particular project or research agenda. You may also need to demonstrate the value of engagement to them. This can be done through publications or local events but the best way is to create a monitoring and evaluation strategy for your program.
One thing to think about is that retention is a metric of strong engagement but is not engagement itself. Thinking about activities that will build trust, increase transparency and increase participation in the process of research should lead to increase retention as a metric of success. Have you had a focus group with stakeholders asking why they are not continuing to participate? What about putting a survey into the field asking why some have never come to a CAB meeting or town hall etc. This is a first step in helping you develop mechanisms that may be useful in retaining stakeholders.
Hi Everyone! I’m Jessica Salzwedel, one of your facilitators for the course! I’ve been a member of the GPP team at AVAC for almost 4 years. Before joining AVAC I working at the Division of AIDS in the Research Ethics branch. Teaching this course is one of my favorite things to do because I get to interact with all of you! Some non-work facts about me… I live in Washington DC. I love to run and have completed 4 full marathons so far. I’m also seven months pregnant with my first child. So, unfortunately I wont’ be able to see your final plans this year. But I will be involved until the baby comes in early April.
I’m really looking forward to meeting everyone! 🙂
In my opinion GPP is not something that is associated with a single trial or study phase. it is something that is part of the way the research center operates. Engagement is something that is continues, it has periods of ebb and flow but is a constant interaction between the site and stakeholders. This could be small interactions like a quarterly newsletter to sporadic research literacy training between trials.
GPP is relevant for every trial at every phase.
Richard- I think your mention of a political component is an interesting one. Sometimes a stakeholder may be important to reach out to, solely for access to other stakeholders. For instance, interfacing with police may be an important first step to getting MSM or sex workers involved with a research site where those populations are criminalized.
Fanele- I think you raise an interesting point that engagement is a two way street, and just because we feel a stakeholder is important doesn’t meant they want to be involved. If they hold influence in a community it is still important that be involved so i think the quarterly updates are important. Do you feel as though quarterly updates are enough for stakeholders who really need to be involved, for instance those that may not be in favor of a trial?
Nkunda- Can you elaborate on why funding was required to regularly update stakeholders in the community?
Lucky- your issue of stakeholders being over committed is really interesting and something i can relate to! Many times we see the same community members volunteer for CABs and committees. Their eagerness leads them to be selected to protocol teams or to attend meetings. This can leave us in an interesting position where we think we’re engaging community but are actually engaging the same five or six or twelve voices over and over again. It is important to be mindful of the diversity of voices we have at a table. I liked that you raised knowledge retention as an issue. When you don’t have members who show up you have to repeat information to ensure they are up to speed, but this takes away from some of the planned and important engagement questions. This type of experience highlights the need for both a wide variety of stakeholders and a wide variety of mechanisms!
Haoyu- the situation you’re facing is unfortunately not unique. There are some researchers who equate “community engagement” with “participant enrollment” and for them engagement is a means to an end. But as you’re experiencing now engagement is actually something that must be done for its own sake. Building trust with a community is important. Later in the course we will discuss how this trust can impact trial enrollment, conduct and exit. Formative research is the basis of your stakeholder engagement plan so it is wonderful to hear that your group is starting to think about the issues of MSM face in that community. We will continue to talk about the issue of funding. We will look at forming partnerships so you can help sustain engagement even if funding is low and help to create metrics so you can demonstrate the value of your engagement efforts to funders.
Mark- It is hard to believe, even though i know these things happen, that healthcare providers were telling participants of a rumored drug shortage in order get them into trials. It is lucky that you and your fellow advocates have such a deep understanding of the importance of ethical research! I thought your post highlighted the important role of advocacy in research! We will discuss the role of the community educator a lot throughout the course, but this does not mean that advocates do not have an important role. Advocates can help bring the voice of a large group of individuals to light. They can be the watch dogs who ensure that a research team is engaging the community in robust, transparent and honest way!
Hi Everyone- This discussion of the role and composition of a CAB is very interesting! I encourage you to bring these discussions into the lesson 2, 3 and 4 forum discussions. This conversation will only be enhanced by the module content.
I encourage you all to think about Wendy’s question of how to monitor a CAB’s composition and if it reflects the community. It would also be good to focus on what the CAB’s role is. Is the CAB an engager, meaning that they may go out and engage with communities on behalf of the research site, or is the CAB another mechanism that the site uses to gain insight from the community? It would be good to get clarity on what each of your sites consider the role of the CAB in future threads.
Hi everyone! I love the responses! The answers that I see about varied knowledge and value of GPP across your research teams are interesting! In particular I thought it was interesting how many of you are talking about the difference between GCP and GPP. That is something that we will be discussing in the course as well.
Haoyu- I thought your point about some of your staff thinking community engagement was about making the community “fall in line” was a really interesting and important point. Something we see a lot is the disconnect between the community staff and the PIs or lab scientists. I’d love for you to elaborate on that. Is it that the researchers are just unaware of the importance of engagement? How has the community engagement staff demonstrated the value of engagement work in the past?
Do others face similar struggles?
Hi Everyone!
Great conversations happening already! This is something that we will discuss a lot throughout the course. Stakeholder engagement is not about recruitment or retention in a trial. However, a sign of good stakeholder engagement is enrollment numbers.
Bamidele- what are the issues participants are facing? Are you enrolling a key population so discrimination or stigma is an issue? Or is the site itself difficult to access? What about the community’s perception of research? All of these and more will factor into a participants ability and desire to stay enrolled in a trial.
Isaac,
A CAG is a community advisory group. It is one way to refer to a CAB or it could a separate body that comprises just the target population. For instance you might have an MSM community advisory group and a community advisory board. The differences are very subtle. I just want to bring Mark’s comment from earlier into the mix again. It doesn’t matter what you call it, how the group functions is the most important.
In the course we will emphasize the different ways you can reach out to populations. Sometimes the key is not to target them directly but to try and include allies. For instance, if you are trying to target young men you may want to reach out to local athletic club leaders and parent groups. I think this is a very interesting thread and I’d excited to continue to learn what others are doing!
