Forum Replies Created
-
Replies
-
regarding comment about CAB and communication between CAB and team members. One area we struggle with as a site is how to make the process of getting our CABs input into our MTN protocols more systematic. Our CAB consists of members of the MTN and ACTG. I can see a very clear systematic way that the ACTG send protocols out to be reviewed by the CAB. I feel that this helps facilitate input and communication. There are specific formats for the protocol, forms to filled out and a central person responsible for collecting those comments. The MTN does not have the same systematic approach when a new protocol needs to be reviewed. As I said in my last post, I feel that we as a site (and the network as a whole) does a good job of getting community input, but I think the way it gets that input specifically from the CAB could be better. Its more of a “on the fly” type of approach. The team send out an email, the community educators reflect on it and send out requests for input from CAB members. But because of the timing, it is very seldom discussed at CAB meetings and there is no systematic way to get that input.
I feel that having a systematic, standard approach would help clear the line of communication from CAB to protocol team.
Ive been thinking about this and I cannot come up with a time at my current position where I felt that stakeholders weren’t engaged before the trial started and there were adverse events as a result.
During protocol development the community educators, representatives and stakeholders are very active. I started my position as community educator right when MTN 017 started recruiting. While I wasn’t part of the pre-implementation, I learned from it and as a site we conduct all of our studies similarly.
As we move into the future of PrEP innovations, the MTN and all of our clinical research looks heavily on community input. After the MTN 017 trial the MTN held a 3 part meeting about how the network should move forward. 1 of the 3 sessions was entirely composed of community voices (myself included). In this session we discussed how men were fine with the product, but did not like the applicator. We felt that we needed better options for microbicides to move forward.
In part a result of those planning sessions, our site will be doing studies to see if there are other delivery options that are viable. MTN 033 will be looking at the possibility of using the gel sans applicator and the DREAM study looks at delivering the medication via enema.
Regarding the CAB: We have been trying to get more young people involved in our CAB (and our research) for a while. The biggest challenge we face is that currently our CAB does a very good job representing the research participants that we enroll into our study, but we are always looking to bring more young people into our studies and in it would be a huge help to have some younger folks on out CAB to help give us ideas. We’ve slowly started reaching out to youth organizations for ideas.
Regarding the CAB: We have been trying to get more young people involved in our CAB (and our research) for a while. The biggest challenge we face is that currently our CAB does a very good job representing the research participants that we enroll into our study, but we are always looking to bring more young people into our studies and in it would be a huge help to have some younger folks on out CAB to help give us ideas. We’ve slowly started reaching out to youth organizations for ideas.
I think our entire research team is familiar with the ideas of GPP. As the community educator, I get to see first hand how our entire team works to include the community in our research. The main way our site engages the community is through our Community Advisory Board. Every month numerous staff participate in this meeting. Our clinicians attend to give reports on ongoing studies. Investigators participate in each meeting by either reviewing a protocol with the board or discussing results of a recent study.
Our site is federally funded and I know that there are community engagement activities we need to complete in order to obtain our funding, but in the 3 years that I’ve worked at this site, I have never heard our community engagement activities be referred to as anything but essential to good research. This has never been a time that I felt that our team “was going through the motions”, rather there is a strong desire to get community input so our research will do well.
