By Anne Coletti, MS, Scientist, Family Health International (formerly with the HIV Prevention Trials Network)
In late 2008, the HIV prevention field was preparing for the dissemination of results from the HPTN 035 microbicide study. Although a few investigators who were responsible for data analysis knew the study results in early December—about two months before the public announcement scheduled for the Conference on Retroviruses and Opportunistic Infections in early February 2009—most of the site-level study teams and all external stakeholders did not yet know the results.
As the sites and network staff worked on dissemination planning and putting together materials for the possible scenarios (positive, neutral, or negative trial results), the few of us who knew the results had to maintain strict confidentiality. This meant helping the site-level teams articulate the implications of various scenarios, despite knowing which scenario in fact described the real results. At times, it was heartbreaking to send scenarios to the sites, knowing we were sending them extra work.
While those “in the know” felt these scenarios were painful and a waste of time on occasion, others outside the information loop stressed the importance of scenario planning and the role of the exercise as a means to build capacity at the sites and to prepare the broader field.
If I could do it over, I would want to share the scenario-planning materials months earlier, and work out the messaging before anyone knew the results. This would have removed the time pressures from the sites to review and translate multiple materials, and it would have given them more opportunities to think through each scenario as a team.