Expert: Build Trust When Recruiting for Disease Trials via Social Media

When using social media to recruit trial participants with rare diseases, it is important for sponsors to earn their trust by sharing general disease and trial knowledge before pitching a specific trial, an expert says.

For this population, sponsors should make sure that most of their social media posts include high-quality information about the specific disease, says Matt Miller, digital media and marketing manager at WCCT Global. Online information about rare diseases can be difficult for patients and caregivers to find. As a result, social media communities have sprung up to provide information and support, and sponsors can become a useful resource in these groups.

In these communities, it is even more important to build trust and spur engagement, as members are often the parents of a patient and would need to have strong trust in a company before considering a clinical trial.

For rare-disease trials, sponsors need a higher ratio of general news posts to trial pitches than the 75/25 rule Miller advises when recruiting via social media for more common diseases (CTA, July). “The number of posts of each type varies, but typically we post three inspirational, two educational and one study-specific” message, he says.

Sponsors should begin their efforts with posts about the specific disease indication. WCCT Global uses a team to search for hard-to-find information about a disease and then makes engagement posts to draw followers.

The CRO will also begin to explain the clinical trial process and what patients and caregivers can expect. Videos can help to explain different trial phases or why a trial is being conducted for a particular disease, Miller says. Once the patient community has a firm understanding of the disease state and trial process, and engagement is up, the sponsor can start pitching the trial.

Miller notes that good engagement does not simply mean a large number of followers. It must also include comments, shares and likes. Companies should set a metric for the amount of engagement they hope to reach before they begin to pitch their trial.

“If we’re posting something and it is continually getting engagement over multiple days ... with posts that are being shared not only among our community but other communities, we are now able to use that type of traffic and momentum to direct patients to a study-specific website,” he says.

Miller has developed a formula that his company uses to gauge the level of interaction within different social media groups, using that data to judge patients’ willingness to consider a trial.

He is currently running a trial for Hunter syndrome and was able to locate eight patients over the age of 18 in two months using social media recruitment. That level of recruitment in the Hunter syndrome population is “extremely rare,” Miller notes, adding that social media was “a very quick way to find these patients.”

For this specific trial, WCCT Global did not create new social media groups, but it did create a study-specific page on Facebook, building a following among caregivers from other small social media communities. It told caregivers about the trial and directed them to the website.

Miller urges sponsors to try social media recruitment if they have not already, and to learn about different ways to moderate pages and use them successfully.

“We’re doing a lot of good when tapping into different networks and telling people about different studies [when they] may have never heard about the trials unless we introduced them to them on a social media-type platform,” he says. — April Hollis



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