I guess I am blessed that I have been involved in a lot of success. Part of that is because the institutions where I am have a long history of being dedicated to engagement, and that in the US funding for treatment and prevention is tied to various requirements for engagement. I can’t think of many bad examples but here are two \:
At one point, when the site was enrolling individuals for treatment trials that offered full treatment to HIV+ folks who had not been on medication before, a rumor that there were upcoming difficulties obtaining treatment drugs in the community found its way into staff recruitment conversations. This came to the attention of CAB members and we immediately approached the staff complaining that not only was this untrue, but that it was unethical to so blatantly make a connection between trial participation and access to treatment. We honestly believed that had this continued, serious ethical concerns might have threatened enrollment or even institutional support of the site.
In another case, our treatment clinic was sold and moved. The community was not consulted at all regarding the structural, regulatory, operational, and environmental changes that were to be made. As a result patients were very unhappy with things like service and the environment, and perceived that cultural incompetency, homophobia, and other forms of negative judgements were being played out in a contrastingly cold, austere clinical environment. A pop-up advocacy group was formed to voice these concerns at the highest level in order to bring pressure to bear. One of the things we did was make the case that the institution was demonstrating discrimination against the same communities to which it reached for research participants. The IRB was contacted, and for a brief moment research staff (who had not caused these changes) had concerns that successful enrollment might be threatened. When concessions were made, things cooled down, but ufortunately, while these tactics yielded results, they also left enduring hard feelings and damaged relationships on both sides.
I’d also like to give a positive example. The research site needed a new non-study-specific recruitment brochure. The CAB leadership offered to develop this at the grassroots level. The basic layout and content was developed using community process in a series of CAB meetings. We decided to only use non-professional, passionate advocates as models. We were able to get the design work done at low cost. We published multiple versions featuring different photos that might appeal to different potential participants. The CAB oversaw all of this work and the brochure is considered a big success and is still being used.
