Patient Recruitment via Social Media: An Uphill Battle

All-told the Mayo Clinic’s pilot study recruitment using social media and online networks not only helped researchers assemble large and demographically diverse patient groups more quickly, but also they did it less expensively than they could through other means.

“This study is a prime example of patient-initiated research that could be used by other health care professionals and institutions,” conclude the authors of the Mayo report.
But can the Mayo Clinic’s pilot study really be used “by other health care professionals and institutions?”

Was the success of their social media recruitment so easily translatable? Or was their pilot study the result of a perfect storm—A series of factors coming together to make it just the right opportunity for social media recruitment, and anything but commonplace.

What made it a Perfect Storm?
In an article in Digital Strategy & Patient Recruitment for Clinical Trials, Rahlyn Gossen examines six key patient recruitment factors that resulted in the Mayo’s pilot study’s success and a perfect social media fit. (Not to be overlooked in all of this is the Mayo Clinic’s sophisticated, savvy, and deep appreciation of social media).

Gossen, a former clinical research coordinator who now has her own firm, Rebar Interactive, lists these six factors:

• Research focusing on a rare disease

• Concentrated and organized patient population

• Patient-initiated research and ownership for success

• Favorable demographics for patient recruitment via social media

• Widespread Positive Brand Awareness (Mayo Clinic)

• Lack of geographic constraints

(Read Gossen’s analysis here)

“In some cases, clinical research professionals can mimic the factors contributing to Mayo’s success,” says Gossen. “But in most cases, the possibility for successful social media recruitment will largely be the result of static factors like therapeutic indication, patient population, study design, and geography.

“Before undertaking a social media campaign for patient recruitment, it’s imperative that clinical research professionals identify pertinent variables and determine whether those variables are well-aligned with a social media recruitment campaign,” says Gossen.

It is also imperative that whomever is behind the effort is equipped with the social media skills enjoyed by the Mayo Clinic (You only have to go to their Website for a glimpse of their media expertise and sense of design). They must also be motivated by more than just a desire to sell a social media service.

“The reality is that, in many cases, patient recruitment via social media will be an uphill battle,” says Gossen. “But all is not lost. You can still recruit patients who frequent social media sites with advertising on those sites, thereby eliminating the challenges of patient recruitment on social media websites.”

Gossen told Applied Clinical Trials that it is important to distinguish between social media and advertising on social media platforms. “This is an area where I find there to be some confusion, and that confusion tends to muddle the discussion about social media in patient recruitment,” she said. “Social media is by nature a dialogue and requires a very different strategy and skill set than online advertising, which is more of a one-way broadcasting medium. An example of this distinction in practice is the difference between, say, putting up a Facebook page and conversing with those who are commenting versus putting up ads on Facebook. This distinction, I've noticed, is unclear regarding terminology.”

Social media is just that social, and it requires long term engagement between participants that runs counter to say a study specific goal and just putting out the word that’s there’s a trial going on.

Whereas a tactical advertisement on Facebook can be targeted among the sites hundreds of millions of users. Its offerings for advertisers also can be highly targeted to specific geographic areas. And with such a large population, Facebook can reach a high percentage of potential patients across all levels of income and education. Traditional media can’t even touch those results.

Groups like me
Peer influence to generate interest in participating in a trial is another method to generate trial recruitment. PatientsLikeMe hosts all kinds of disease communities where patients can track their medications, symptoms, and health outcomes and can learn from other patients whose profiles resemble their own. It allows the industry to look at aggregated data from its communities. And now it allows them to partner with pharma companies to announce clinical recruitment trials through its online communities. Other patient sites like Inspire (utilized by the Mayo Clinic pilot study) and armyofwomen.org do the same.

Nevertheless, the uphill battle in social media recruitment Gossen referred to earlier was confirmed last spring by a survey conducted by Blue Chip Patient Recruitment and shouted out by Ed Silverman at Pharmalot.

Silveman adds a caveat: “The company is a division of Blue Chip Marketing Worldwide, a marketing agency that is, of course, attempting to promote its expertise by conducting the survey and disseminating the results as a worthwhile snapshot.”

Nonetheless the study found:  Of 179 adults, who were queried through postings in online health communities, 84 percent have never participated in a trial.  Twenty-two percent would enroll if a drug offered a cure and 21 percent if they could help find a cure. For the complete report: http://www.bcpatientrecruitment.com/main.html.

Online or offline, safety also presented an issue to the survey participants:

• 41 percent reported that trial safety is a primary concern

• 36 percent cited the credibility of the trial information found online

• 88 percent would prefer receiving clinical trial info online from a doctor.

And when asked where they would first go to learn more about a trial:

• 46 percent pointed to doctors

• 24 percent said search engines

• 70 percent were comfortable receiving clinical trial messages from a healthcare association rep - the example offered was the American Diabetes Association

• 53 percent were comfortable hearing from an online support group

• 36 percent cited a live online chat

• 32 percent cited a web site message board.

For those invested heavily in the favorite social media sites:

• Fewer than 20 percent were most comfortable receiving clinical trial messages by way of a Facebook wall or a Twitter profile. Meanwhile,

• Only 30 percent were aware of key clinical trial websites, with

• Only 18 percent were specifically alert to ClinicalTrials.gov.

The Blue Chip’s finding are consistent with other studies on social media and online health information seeking. Gossen points out: “For example, Pew Internet’s 2011 report, The Social Life of Health Information, found that only 15% of Internet users got health information via social media.”

Gossen also adds that this statistic would be far lower for clinical trials information seeking, which comprises a small proportion of overall health information seeking.

In the end, using social media for patient recruitment is perhaps not so much an uphill battle as an exercise in strategy, discernment, and selection. It can work, it can even be an ideal method (as seen in the Mayo Clinic pilot study) but the particular conditions of the study must fit the social media opportunity, and not the other way around.