Social media can be a great communication channel for clinical trials, but unless you are ahead of the game, it can do more harm than good. This was highlighted recently by the story of Amber, a parent who found out on Facebook that her son Garrett’s muscular dystrophy trial had failed (Nature, November 2018 issue). In Amber’s case, the thought of wasting limited time with a failed trial was hard enough, but the news of the trial failure did not come from the trial organizers, but through a Facebook post from another parent. In that case, even the local clinical trial coordinator did not know that the trial had failed. These types of scenarios only serve to disengage potential participants and their caregivers. As an industry, we need to be better informing and inspiring potential participants about clinical research as a care option and making sure experiences like Amber’s don’t happen.
The thought of wasting Garrett’s limited time with a failed trial was hard enough. The news was all the more disturbing because it didn’t come from the trial organizers, but through a Facebook post from another parent. ‘It was upsetting that we found out that way,’ says Amber. ‘It sent everybody on Facebook into a tizzy.'
Beware the online ‘experts’
It’s a good thing that patients form networks on social media to share information and offer support to each other, right? Not always. With such a wide range of people offering advice on Facebook, Twitter, and various other online communities, patients and caregivers can’t be sure they are getting answers they can trust. Potential and existing clinical trial patients are often very vulnerable to misinformation that puts their safety at risk. Information that patients find online can influence whether they participate in or stay on clinical trials. Worst-case scenario, online conversations between patients can jeopardize the scientific accuracy of a study if participants discuss details revealing which treatment arm they’re on.
How do you turn social networks into a positive for clinical research?
The benefits of social media in terms of recruiting and engaging patients could far outweigh the risks and enable sponsors to provide support for patients that can lead to better outcomes. Developing an online strategy for your trial and ensuring it is a key part of your overall communications strategy is essential.
This could mean proactively creating and managing an online study portal designed to be used as an authoritative information hub by patients and caregivers, rather than leaving a gap in which patients and caregivers have to seek information from each other. This provides a safe space for people to hear the facts and find support that encourages deeper ongoing engagement between the sponsor, the managing study team, and the patients and caregivers involved in the trial.
Developing a dedicated online patient portal as part of your trial’s integrated management platform helps patients to recognize when information is official and accurate, and ensures they can receive ongoing, accurate, and up-to-date information. This could prevent a situation like Amber’s happening again because patients or caregivers would not be at risk of finding out news about their trial second-hand.
Get ahead with a social media strategy
Social media is changing the face of clinical research. If left ignored, social media activity around your trial could at the least be a PR problem, and at worst threaten the scientific integrity and patient safety of the trial. Proactively developing an online strategy and a safe place for patients to find information helps sponsors to harness the benefits of social media and minimize the associated risks.