Social Media Fears Mean Lost Opportunity for Trial Sponsors
Trial sponsors are missing a big opportunity for recruitment because of fears of using social media, experts warn.
Many sponsors are concerned about adverse event reporting, fearing that they are responsible for any information on the internet — even in closed groups. However, “the response from the FDA has been that you really don’t need to be trolling the internet looking for AEs,” Nariman Nasser, digital strategist for Genentech, said during a recent FDAnews webinar.
If a sponsor comes across an AE, they would have to report it, but they are not required to proactively look for AEs, she says.
Sponsors can also take steps to better manage AE reporting on their Facebook pages, adds Matt Miller, director of marketing and patient recruitment for WCCT Global. For example, a company can access the settings of its Facebook page, select “page moderation” and insert any words that should be flagged. Then, if someone uses those words in a post, the post will automatically be hidden from public view but the company will still be able to see it. Possible words to flag could include protocol numbers or drug names.
If an adverse event is mentioned, the company can report it to the FDA and communicate with the patient privately, potentially getting permission to make the post public and begin a discussion.
Another major concern sponsors have about social media recruitment is poor targeting.
“One of the biggest objections that I get when talking to new companies ... is, ‘Oh, I don’t think my patient population is online or on social media primarily,’” Miller says. To the contrary, a survey he conducted of 1,165 patients who had joined a trial in the last three years showed that 86.94 percent found it helpful to have clinical trial information on social media.
Important considerations for targeting include:
Mobile optimization is another key issue as people regularly use mobile phones to browse the internet. “Moving forward, especially when implementing any type of recruitment campaign, if mobile’s not the focus of your entire campaign, you’re missing out on a huge source of traffic and also patient userability,” says Miller.
His survey revealed that 38.23 percent of trial participants would share information on their experiences via Facebook, Instagram, Pinterest, Twitter and Snapchat. Twenty-six percent would use review websites like Yelp and Google Places, and 6.62 percent would use health blogs and health websites. About 28 percent would use all of the above.
While “Yelp is something that many companies overlook ... I see it as of extremely high importance,” Miller says. Sponsors and CROs can use social medial to gather information on a potential site by reading what patients are saying.
When beginning a digital recruitment campaign, sponsors should start with email marketing to patients in their databases. These emails should include buttons for sharing the information on Facebook and should encourage recipients to do so.
For Facebook marketing, it’s a good idea to stick to the “75/25 rule,” Miller advises. That means three out of every four posts should be “engaging” and should include pictures, educational information about trials in general, or news about the company, the trial site or advocacy groups.
Every fourth post should be study-specific and include a link to the sponsor’s website. “I try to keep a lot of study-specifics, including the exclusion criteria, off of social media and put it more onto a regulated format, but you can still have your IRB-approved information telling them about a specific trial [and] linking back to the study-specific information,” Millers says. Sponsors should make one new post per day on social media.
Digital campaigns will likely spark an increase in traffic, and this traffic should be directed to mobile-friendly landing pages with IRB-approved study information and a button for sharing the information on Facebook. The landing pages should also include an area for patients or caregivers to sign up for the trial or request more information.
Adding a conversion code to elements in the campaign can help sponsors track exactly where their online traffic is coming from and what percentage of that traffic is signing up for a trial.
Nasser stresses that digital engagement is not a replacement for traditional recruitment methods. Rather, it should be used as part a larger approach to patient recruitment, he says. — April Hollis
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