Social media can definitely affect communication and we saw that particularly with HVTN 505. In that study, vaccinations were halted early following the recommendations made after a DSMB interim analysis. Participants were notified as per communication plans and notification as well as follow-up materials (slide sets among others) were prepared for CABs and stakeholders by the HVTN to help them better understand the results and implications. But the participant notification was made public almost immediately via social media, and well before NIAID had issued a press release. After two (or three) social media postings and a posting on Wikipedia, NIAID was prompted to issue its press release earlier than anticipated. Luckily, the postings were not inaccurate. Many of the immediate postings thereafter tended to be positive in tone despite the disappointing results, but it still necessitated some fast planning and action.
The news for HVTN 505, while certainly possible, was in many ways unexpected at the time of the DSMB and caught us a bit off guard. We were able to quickly mobilize a call with scientists and key stakeholders to discuss communications strategies and timelines but the news really did take on a life of its own in many ways. While media and stakeholder lists can be developed early on in the life of a trial, this really emphasizes the importance of regularly reviewing them, and of having all pertinent staff – from NIAID, the network, protocol chairs and sites, up to date and ready to implement the plans should they need to. The study did get a lot of attention following the initial announcement, and although the results were disappointing, the messages were consistent and focused on the fact that we really do learn something from every study. Also, many of the messages were focused that although the results were not what we wanted, the trial did what it set out to do, which was answer the scientific question as to whether or not the vaccine regimen was effective. There were also those asking whether we really did need a vaccine given that there were other prevention strategies. This provided an opportunity to emphasize the critical need for continued HIV vaccine research and to reiterate that while other prevention modalities are very important and can have an important impact, a vaccine remains our best hope for truly ending the epidemic.
