On being a medical hero in the era of social media: Discussing clinical trial participation online

By Kathleen Hoffman, PhD

“Garrett’s Hero Run” is not the name of a New York Times Bestseller or an up-and-coming blockbuster movie – though it could be. At the moment, it’s the name of a series of races held every year in a small town in Tennessee. A fundraiser name that is poignantly metaphorical. Everyone comes dressed as their favorite superhero and they run the races. But the name is also emblematic of urgency because this is a race against a rare and fatal neuromuscular degenerative disease that Garrett Sapp has.1 Garrett has lost the ability to run but he and his family and all the families affected by Duchenne’s muscular dystrophy (DMD) are in a race against time.

Clinical trials have been part of the Sapp family’s life because they, and other parents of children with DMD, are desperate for any treatment. Most children with DMD will be in a wheelchair by the time they reach puberty. Most live only into their 20s.

Time is of the essence. It’s little wonder that, with social media, these parents are actively engaged in discussions about clinical trials. Yet very little research has been done on the impact of these type of social media interactions. A 2012 article describes a review of content from social media communities among self-identified clinical trial participants. The researchers concluded that these type of discussions could jeopardize the integrity of clinical trials.2

Bloggers are also sharing clinical trial experiences. One notable blog is named “Fingolomid and Me,” after the compound being tested in the FTY720 clinical trial in which Jeri Burtchell, a patient with multiple sclerosis, participated. Started August August 11, 2007, Burtchell, chronicled her experience in this trial.

“In this study, I have a 2/3 chance of getting the Fingolimod (FTY-720) as there are 2 groups getting it (one at 1.25 mg and another at 0.5 mg) pitted against an already approved MS disease modifying drug (Avonex). I’m crossing all my fingers and toes that I get one of the doses of Fingolimod…”3

On August 21 she wrote,

“[The nurse] tells me the shot should go in the outer half of my thigh,…. She wipes with alcohol, and the next thing I know I’m seeing that big needle sink into my thigh… It went right in with no effort at all and I couldn’t even feel it. She pushed the plunger and I braced myself for a sting or burn as the medicine hit my muscle, but … nothing. It was at that point that I’m thinking “hey!! I bet that was just water!!” which means I can quit worrying about Avonex side effects and worry about Fingolimod ones.”3

She guessed right about being on the compound. When the drugmaker changed the medications name, Burtchell followed suit calling her new blog “Gilenya and me.”4

Conversations on social media by people in clinical trials range from active support to efforts to play the system, with patients explaining how to meet the eligibility criteria and how to figure out what treatment they are taking. This coaching has included advice to not report side effects.2

Social media companies can help with this. Inspire has a policy that prohibits these type of discussions on clinical trials. Moderators monitor the site and remove posts that break this rule.5

But the onus is also on the pharmaceutical industry. Participants in clinical trials need support. Yet they are not getting what they need. For example, for the past two and one half years, the Sapp family had been driving Garrett six hours, once a month, to a hospital to participate in a clinical trial. One day this past August, Amber, Garrett’s mother, learned from an online post by another parent, that the trial had failed. Learning this terrible news online, instead of from the people who she had been working with for two and a half years, was devastating.5

Garrett has participated in another trial for a drug which was supposed to keep children with DMD walking. Online, there were parents showing videos of their children walking and improving, but the Sapp family saw no such change. They discussed dropping out of the trial because, as Amber said, “Nobody wants to be in the control,” … “We don’t have a lot of time with our boys. Nobody has time to waste.” Should patients with DMD be expected to be a control in a clinical trial when the only available “treatment” at this time involves symptom-relief to improve quality of life?

Clinical trial participants are medical heroes and they should be treated like heroes.

In a new article in Nature you can learn more about Garrett Sapp, the Sapp family, and explore the many facets of social media, clinical trials and the importance of including the patient’s voice in clinical trial design and development.5

See our case study, “Using Discover Social Landscape for clinical development insights: A rare disease patient journey”

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