I have a unique point of view since I am affiliated with the research site where events that were presented in the current module’s 505 case study occured. While what occurred was not to my knowledge part of any planning or strategy, we were fortunate that it turned out to be something we and the network were able to leverage positively.
My experiences over time as usage of the internet and web has evolved have taught me that as each new mode of communication emerges, it adds to and does not replace what we’ve already been using. So these new modes don’t replace but add to the larger communication scenario. This sometimes means more, not less work, more, not less planning, and consideration of more, not less contingencies.
I think we need to take care not to romanticize social media and/or online communication or treat them as a panacea. In reality in my experience, the pitfalls of social media are very much like those of traditional mass media – outside of planted stories that stick to press release language and/or coverage by very specialized and invested writers (like those at aidsmap, for instance), the potential for distortion, misinterpretation, and scientific errors is generally high. The only consolation is that most of these problems don’t end the in yield major problems.
Here’s a concrete example regarding the 505 case study cited: What was not reported is that I happened to be sitting at the computer monitoring email when the story broke locally. Although I believe the case study discussed the story being published in our local mainstream daily newspaper, Tennessean, it was actually our local lgbt community newspaper which was the news outlet which first broke the story. I happened to have a good working relationship with the editor and contacted him immediately (as a community activist) about a quote attributed to the local PI that referred to the DSMB halting of injections as a “failure” and some other minor linguistic fine points. Fortunately he agreed to amend the story (which at that point had only been published online.)
We’ve come a long way since 505, and now what you will see at our site with regard to the AMP study is that social media is being leveraged very heavily. I would say this is both beneficial and risk-laden. Social media is highly beneficial when accurate messaging is sourced from the site or network and when best practices are used it attracts a lot of interest in participation. Social media (I’m thinking primarily of facebook, but also others like snapchat and twitter) offers the additional advantage of serving as a primary communication platform for relationship building and post-enrollment contact for may of those who are in the demographic age range that AMP targets in our community.
I think there are risks when participants become very public and there is always the risk that someone from within our outside of the study will begin to use social media to attack or spread misinformation about the study. Our site is encouraged to follow network policy in terms of handling social media, but the bottom line is that it is impossible to control. Just like individuals who have been participants who choose to become public and speak out are impossible to control. Just like mainstream media is impossible to control (but I concede relationship-building can help mediate risk more easily in this instance.) In the end social media is just another communications reality with which we must deal.
I would say the measures that need to be taken include making sure that key talking points are pushed heavily and regularly from the site and network itself so that they carry the most weight and have the most visibility. I think it is very important that relationships with media players be strong so that those resources can be called on for help if an individual goes rogue via social media or the web. It is important that when the site works with participants to promote trial participation via social media, that a kind of consent and counseling process takes place (and even legal releases signed) before that collaboration and promotion occurs.
