Pharma continues to grapple with trial participants' use of social media

While it is years now since clinical trial participants started talking about their experiences online, the industry is still searching for the best way to approach the phenomenon. And with pharma needing to improve the clinical trial process, the onus is on the industry to find systems that not only manage the negative implications of social media, but tap into its power, too.

Clinical Informatics News dived into the topic this week, with Big Pharma execs, patient advocates and technology providers all having their say. From a biopharma perspective, one of the main problems is that while everyone knows patients are discussing their trial experiences online, the industry is yet to work methodically and rigorously to understand the trend. "There is not much organized research on social conversation during clinical trials," Craig Lipset, Pfizer's clinical innovation chief, said.

The grounding of this research could help companies design strategies that meet the needs of the trial, while also allowing patients to meet others who understand what they are going through. "A trial is an isolating experience," Jeri Burtchell, the first person to blog about a study from start to finish, said. Burtchell's blog became a gathering point for other people in the trial of Novartis' ($NVS) multiple sclerosis drug Gilenya.

Clinical Informatics News proposes several ways trial sponsors can foster these communities, while deterring patients from unblinding the trial or coaching others on how to meet inclusion/exclusion criteria. Burtchell's blog shows one possible approach. Participants needed to show their medicine bottles to prove they were in the trial. A trial sponsor could replicate the model by setting up private, monitored message boards and giving everyone in the study a username and password.

Some patients would likely still discuss the trial on other platforms, in ways that sponsors would prefer they didn't, but no model will fully meet everyone's needs. Trial participants trying to work out if they are taking a placebo predates social media. The challenge is to communicate why this jeopardizes the trial. Such an outcome is in no one's interest. "We have too much to lose. The last thing we want to do is compromise or unblind data and ruin the trial," Burtchell said.

- read the feature